I am just wondering if anyone has Hyperadrenergic POTS? I've chatted with a few people on a different forum, but no one has this form, and I have a lot of questions. I am supposed to have a complete hysterectomy soon, and I am wondering if anyone has this type of POTS and has gone through menopause, and wouldn't mind sharing with me what it was like. I am in medical menopause now (I'm 28, so this happened unexpectedly), but I was told today that it's not quite the same, and I am really nervous. I've suffered from POTS symptoms since I was 12, but just got the diagnosis last March, so everything is still relatively new to me. Also, I haven't been able to find a medication that helps, and I seem to experience every side effect there is, so I am wondering what people have tried that has worked. Thanks.
Yes, I just recently found out that what I've been going through is POTS. I had a complete hysteroctomy when I was 36 after 7 other abdominal surgeries for endometrosis. Because of the endometrosis, I had a ghost surgeon who looked through all of my intestines and bladder etc. to make sure they didn't miss any spots. Because of so many other surgeries for this and because I had wanted kids it was very traumatic for me. I decided that I didn't want any more surgeries. Also, decided that I would not go on hormones immediately and tried to stay off for 6 months. I made it only 5 months. My first hot flash was the day after surgery. Because of the adrenal problems, which we knew I had, they gave me iv cortisol during the surgery. It helps your body handle the stress. Chemical induced menopause is different. ( I tried that too.) I had to keep telling myself that other people had gone through this and survived it. In my case because of the immediate stop of hormones and not taking any replacement, it really messed with my head and emotions. Just know someone else has done it and continued on. Its been14 years now.
Because of being sensitive to all medicines and nothing working on me the way it should, when you can do hormones that's difficult too. I found a compound lab in Albequrque, NM that I have compound natural hormones in cream transdermal prepared. I've tried several other labs and reacted to all of them. Also, when I got diagnosised with POTS a year ago, one of the doctors told me to take Red Clover to help balance my hormones. It really works! When I don't take it the hot flashes start all over and my POTS seems worse. I take one cap every morning. I still have flashes but now I think it's more POTS related than menopause related. They told me when I had my hysterectomy that I'd continue to have flashes until my body was supposed to naturally go through menopause. That did seem to be true. Vitamin E seemed to help too.
With POTS they have to do the anthesia different too. I saw a video on UTube of a doctor who has POTS and was an anthesiologist who tells what and how to do it. Make sure all doctors involved especially the anthesologist knows you have POTS and is familiar before the surgery what he will be watching for. Since we didn't know what my problems were, for my surgery, they had real problems with me during the surgery.
I haven't found a doctor to help me with the POTS yet. I reacted to all the beta blockers, florinef and a number of other heart meds. I recently moved and haven't even wanted to try to find a doctor. No one's helped me, so far and I really don't like doctors. I wish I could find an answer. I have alot more life to live and I'm not getting to do what I'd like to do. I think it's a lot of trial and error and being a guinie pig. Especially since it appears that not too many doctors know about or believe in POTS.
Good luck, hun! You can survive this too.
Thank you for responding. I was starting to think I really was alone in this. We decided not to keep doing the hormone shots, but now that we've stopped, the pain is back, and I'm not sure how long I can go before another surgery will be needed. I definitely plan on using the Red Clover and cream - I have some family members who have successfully used both, and I figure the odds are much better that I'll do well with those versus the other options.
I don't want to be done having children, but my pregnancy and childbirth with my son were both really rough, and my husband is absolutely adamant that he doesn't want our family to go through that again. I understand where he is coming from, and when I am being rational, I have to agree with him that pregnancy is not the best option right now. Problem is I haven't exactly been oozing rationality during medical menopause. Two of my friends gave birth yesterday, and 7 other friends of mine are pregnant, and it is difficult for me to be around them some days without absolving into tears just wishing I could be "normal".
I found a cardiologist who has been very helpful, but I haven't been able to find a regular doctor who is understanding of the problem. Every time I get sick, I'm explaining it to someone new, and going through why I can't take all the usual cold medications. I am grateful that at least now I know what it is to be able to explain it to people, but it is still very frustrating. More people seem to be learning about it, but even those who have heard of it aren't always understanding. Most people still think I am just having bizarre panic attacks, and dismiss me.
It helps to know I'm not alone, and that you've made it through this, even if it has been really rough. Thank you again for sharing.
Have you tried Progestrone Cream, compounded? I wish I'd known about it before my hysterectomy. Some people swear that it balances out the too high estrogen and you can avoid having to have the surgery. You might give that a shot before. One good thing, in my case, my pain stopped after the surgery. I had a complete hysterectomy done. The doctor said that the scar tissue would pull the ovaries and that's what is painful, also; a good portion of the time, they have to go back in and remove the ovaries because the endo comes back. So, I decided to have one last surgery and no more. I stayed off the hormones so that IF something was missed it would hopefully die out. I wish I'd done it many surgeries sooner, but mentally -- I wasn't ready. YOU have to be ready for it and determined that it's the right decision for all the LOGICAL reasons. Emotionally, I don't think you get ready for it. You just learn to deal with the fact that it's the best decision with the knowledge we have at the time. Don't look back and be determined to deal with what ever else it brings. Keep me posted. If you decide to go ahead I'll give you some other pointers later. I still have a time at baby showers etc. But, I never was able to have even one child. So, you have a miracle there, very preceious. I'm glad you were able to have a child.
What are they doing for your POTS? I also found out I have Ethlers Danlos. It's a connective tissue disorder that can be connected to POTS. Need to find at least one doctor to help.
My husband's mom recommended the cream, but I didn't know it was something I could do beforehand. I'll have to talk with her again about it and see where I can find it.
I appreciate the comment on logical vs. emotional. Logically, I know that the best decision is to have the full hysterectomy soon, and not try to get pregnant again. Emotionally, that is still really hard, even though my husband and I were agreed before we found out about needing the hysterectomy that we aren't ready for a child anytime soon. I always imagined myself having 2 or 3 kids, running around going to ball games and ballet practice, and even though I am very blessed by having my miracle son, Caleb, it still feels like a harsh end to my dreams and expectations. I guess life rarely throws us what's expected though, and we have to learn to deal with the reality.
I want to do the surgery before the end of the year, because we've already met our out-of-pocket maximum deductible for insurance, so the surgery wouldn't cost us anything. Plus, I am already dealing with pain again, and it's only been a little over a month since the last surgery, and I just can't deal with continually taking time out of my life to go through everything over and over again. Every time the pain gets bad, my POTS symptoms get so much worse, and then I'm not able to care for my son by myself, and I hate that. I dread going through menopause so young, but I'd have to do it eventually, and I think it's better to deal with it now, and not let all the problems continue.
We tried beta blockers, fludrocortisone, alpha blockers, and some other meds, but my body always seems to swing like a pendulum in the opposite direction of what we are trying for. I have high blood pressure, take medication, and then my BP is so low I can't get out of bed. If it's consistently low, and we try to raise it, then I skyrocket to dangerously high BP, and end up in the hospital. We try to balance everything with minimal doses, and I end up with every side effect possible, and in the ER again. I'm just done. What has helped has been doing lifestyle changes, however hard they are to do sometimes. My husband and I changed our diets, stopped eating out much, and I cut out alcohol, caffeine, a lot of processed foods, and soda - for the most part. I still splurge sometimes, but overall we eat a lot healthier, and I drink a lot more water, which is probably the most beneficial. I do light exercising. I can't do heavy or even medium cardio, but I go for walks, pushing the stroller, and do light weights and stretches, and just try to get myself moving in general. I also started taking supplements for heart health and bone and joint health, and that seems to make a big difference. All in all it's a pain, but I feel so much better that I have to just keep reminding myself it's worth it.
I don't know anything about Ethlers Danlos. I'll have to take a look at it. I hope you are able to find someone who understands everything, and can actually help.
I'll let you know when I get closer to having the hysterectomy - I could definitely use all the pointers I can get.
How long have you had POTS problems? Does anyone else in your family have it? I started having problems around puberty, and my mom, an aunt, a great aunt, a great uncle, my great grandmother, and my great-great grandmother all have had it to varying degrees. Of course, they didn't know what to call it for most of those family members, but fortunately everyone in my family likes to write, and I have documentation of the health problems from each generation.
Did your POTS symptoms get any better after the hysterectomy? Have they gotten any better as you've gotten older? Have you figured out what to do to help with symptoms?
Sorry for so many questions. I'd ask family members, but other than my aunt, they all died before I could ask questions, and my aunt's problems are a little different than mine. She had a pace maker put in when she was in her 20's, and she did have a hysterectomy for endometriosis, but most of her symptoms went away when the pacemaker was put in, and she doesn't really want to talk about it - especially since my mom died - she finds the topic "depressing", so I feel like I'm at a dead end. No pun intended.
Anyway, I appreciate your help and hearing how things are for you - the good and the bad. Feeling alone is the worst part of dealing with all of this.
I understand about the insurance thing. That does play a big part in our decision making. I just wish you could wait until you were a little older, but like you said it is the end result. Everyone reacts differently in how their body process menopause. More on that when you get closer to it.
I think I've had POTS most of my life. Been searching for answers for a LONG time. My sister has Orthostatic Pressure dysfunction and similiar problems. My mom and dad have something but are too old to get a tilt test and probably couldn't do it. I think my POTS has gotten worse as I've gotten older. But I've had alot of traumas. Stress makes it worse. I'm reacting to the meds same as you. Too many erratic changes with them. Not functioning too well without anything though. Ready to try some other things.
Can't take time to answer all your questions, right now. On my way out of town. Will get back to you in a few weeks.
I'll give you a little more of my history later. Enjoying talking to you. Keep on KEEPIN ON.
Please don't feel alone! I was diagnosed with IST. Then, with a tilt table test, I was diagnosed with POTS (and although not officially labelled with it, I believe I have the hyperadrenergic form). Less than two years later of receiving an electrophysiologist's proclamation of POTS, I had a complete hysterectomy because of severe endometriosis complications. I hope if you go through w/the hysterectomy, you choose complete, because otherwise you leave yourself at risk for ovarian cancer and also, will almost definitely have to have a follow up surgery to remove whatever ovary you saved within a few years.
Prior to my hysterectomy, my internal med doctor at that time was concerned I might have a pheochromocytoma and wanted me to be sure they had some labetolol on hand for my surgery. It came in handy after the surgery, because I was having an itchy face reaction to the dilaudid they gave me and they had to give me benadryl, which made my already high at the time pulse and BP spike even higher.
You reminded me when you mentioned cold medicine about a doctor telling me what I could take with POTS. He circled chlorpheniramine maleate on a list, so at his word, I bought some. I noticed an increase in my heart rate and so I called a pharmacist who let me know it could cause it and so I learned that doctor gave me bad information.
Because I had grave concerns about HRT, which had been in the news about long term especially risks of life threatening potential side effects and because I did research and learned even a low dose patch of estrogen could potentially change any missed endometrial implant (they say they can't see the microscopic ones) in to cancer, besides estrogen replacement could make the implants grow, I opted not to get any HRT pills/patches. It has been less than four years and I already have osteopenia close to osteoporosis and I'm still in my 30s. (By the way, if you have endometriosis, ask them to excise rather than laser burn whereever possible, because the body views the laser burned material as foreign matter and this causes additional scarring and adhesion potential.) Maybe it's because of my pituitary tumor where I didn't always ovulate prior to my hysterectomy and had hot flashes occasionally, but after a very short time, my hot flashes dropped off to only a few or so a day. Everybody's different.
I found my hysterectomy to be a much easier recovery than my emergency lap the year before where I had them keep all the reproductive organs (not knowing I had severe endometriosis), except for my bladder, which was a tough recovery because it had to be separated from where it was folded and stuck to my uterus with endometriosis and about a 2 cm chunk cut out of the bladder wall. I was so relieved to not have extremely painful periods anymore. I was a little depressed, so added for a while 5 mg of prozac a day to my Sam-E and flaxseed oil capsules regime.
As to my POTS, well it can be made worse if your iron and or ferritin are low, so if you haven't got those checked, please do. If one of your main reasons for getting the hysterectomy is your POTS gets so much worse, that is a VERY LIKELY culprit & I would stop and reconsider. I found before the hysterectomy getting my iron in normal range helped bring the tachycardia numbers down from the low 160s in the morning a ways.
Even now, less than four years out from my hysterectomy and stopping menses, I had something else draining my iron- possibly GI related bleeding & my POTS got worse. I'm taking iron again! I will tell you that with my iron in normal range before and after hysterectomy, I notice very little change in my POTS. Just last year, when I believe my iron and ferritin were in normal range, I found out something I wasn't aware of- my heart was going up to over 100 at some point in each of the majority of hours during a 48 hour holtor monitor. I didn't do the usual sitting on the edge of the bed for a little before getting up after sleeping, and thus, my heart rate got up to 152 and 148 at the highest peaks.
I tried verapamil a second time, hoping it would help things, but when I tried to get back to the 180 mg I had been on previously, I got a migraine and discovered my BP was quite low. So I stopped. The cardiologist I had seen hadn't wanted to put me on any BP medicine anyway because he felt it would just make me feel worse.
At times I eat salt out of my hand or drink some G2. Little adjustments here and there. I don't think my POTS is any worse or any better than before my hysterectomy.
I have POTS and have massive overshoots in BP, a specific type has not been diagnosed but I believe I may have the Hyperadrenergic form. You may already be aware but for the Hyperadrenergic form (H) and the partial dysautonomicform (PD) different treatments may be recommended, below I have posted a link to a table listing therapeutic options in POTS:
I am also, like you, sensitive to a lot of medications. The latest is intravenous Cyclizine. I am fine with this via tablets and injections but recieving it through a drip is to much for my system to cope with. My dad has symptoms of this also, but not to the extent I have, but he has not got a diagnosis. I have had symptoms for several years but a year ago this made me barely able to function. Every month due to my cycle I am severley ill with symptoms so for around 2 weeks am unstable, I have been given medication to stop my cycle but am hesitant in taking hormones incase they add to what I am already coping with!!
Please don't feel like you are on your own fighting this, there are many on this forum who know what you are going through and will do all they can to help and support you xx
just adding my 2 cents.... I also have not told that I have the Hyperadrenergic form but just based on the symptoms I would say I do too. Both my BP and HR spike way up when upright and any little movement. My POTS is post viral. For a few months now I have been in treatment with Clonidine and it seems to have controlled my BP to a more normal readings, now my BP when lying down goes below normal levels and with the Clonidine it has gone quite low so I have to watch it adjust accordingly. Currently I'm taking 0.075mg 4X/day. My HR was still too high so for about a month now I have been on 20mg of Celexa and that seems to have lowered it a tad, it still goes quite high with exercise though, but at least I can do more around the house.
I'm also anemic, my ferritin is at 6, due to very heavy periods, my doctor does not want to put me on anything that would alter my hormones since we do not know what that would do to my body, but I am seeing a Gyne in a month to see about getting an Endometrial Ablation, from what I was told it could stop ones' periods for up to 5 years or at least make them very light and hoping this will help with my anemia, also this procedure wouldn't alter my hormones so we'll see how it goes when I actually have it done.
It is a very frustrating thing that we are going thru, sometimes I'm so 'sick' of being sick but then I have to remember that I could be worse, or it could be one of my kids, so it quickly makes me feel thankful that it isn't worse and that it isn't my kids!
Hopefully you will find the medication that will help you soon!
I'm glad you posted, because I was wondering how you were doing with the Clonidine. Does it help your diastolic as well as the systolic? The diastolic is what I'm most concerned about when I'm up and my heart is racing and the BP goes up. It sounds like a delicate situation?
When I was put on Celexa in the past, it made my migraine situation come back with a vengeance after I had a brief seeming remission from them back in 2001. It also made me gain I believe about 35 pounds, some of which I lost after discontinuing it.
oh boy I sure hope it doesn't make me gain weight!! I'm already needing to loose some and I don't need more.
Yes the Clonidine has lowered both. At the beginning only the systolic was decreasing, but as I increased the Clonidine dosages it started making the diastolic lower too, it also helped with my heart rate but it didn't lower significantly until I started on the Celexa. The way my doctor put me on the Celexa was 0.025mg once a day, then I would take that for about 4-5 days, on the 5th day or so, I would add another 0.025mg, until I reached 0.025mg 4 times a day with the 4-5 days in between each increment, now I'm at 0.075mg 4 times a day and it looks like I'll stay at that for a while since the BP seems to be at normal levels 98% of the time, the other 2% I'm dealing with too low BP but that I have found easier to manage, I get moving or have a 1/2 can of Coca Cola and I'm quickly at normal levels!.
I had horrible headaches like 3/4 times a week, and now they are non-existent (knock on wood) for me the headaches were definitely because of having the blood pressure so high.
Now I'm dealing with these unexplained swelling so we'll see how that will be treated...
Thanks for the info! I had been thinking before if my echocardiogram showed something worse than last time and you were doing well, I might ask my doc about clonodine... but I got great news so far from the nurse on that front! I hope the swelling doesn't spell heart failure! It seems like it shouldn't since things are looking better for your BP and pulse! I wonder if your salt levels have gone too high?
I go to see my doctor again next week, I'll ask if my sodium levels where checked, I also want her to refer me back to the Specialist who put me on the Clonidine and see what his opinion is in the matter, my swelling comes and goes and I haven't been able to figure out what is the difference on some days versus others. I'll post what will be done about it.
Stress makes my symptoms worse, as well. I majored in psychology and took a stess management class, so I've learned to handle mental stress fairly well, but physical stress, like surgeries, flu, colds, and pain in general will still cause flair ups in symptoms. I hope you have had a great trip out of town!
I will be doing the complete hysterectomy. My mom had large, cancerous tumors form on each ovary, two years apart, after having a partial hysterectomy, so I am well aware of the dangers, unfortunately. I was checked for a pheochromocytoma, but everything looked fine, which really baffled my dr. because he was positive I had one somewhere. I also can't tolerate dilaudid. I have to stick with DayQuil for colds, and use a steamer and nasal spray for sinus issues, which I have frequently due to a bone tumor in my sinuses. I had hotflashes before the hormone shots as well, and they always signaled a severe episode - losing consciousness and having my whole body shake like I was having a seizure. The symptoms usually stayed until I could get my body cooled down - usually by having icepacks on my forehead and neck. In the last ten months, I've only had that happen when I've had the flu or had my blood drawn. I'll definitely have my iron checked again - I've had issues with severe anemia off and on since I was born, so I wouldn't be surprised if it's contributing now. I think my issue with the endometriosis and IC is that they both can cause a lot of pain, and my body doesn't seem able to handle any type of pain without randomly shooting adrenaline I don't need.
I can understand your hesitation to try something new. I am supposed to start taking something for my bladder, but I keep putting it off because I have too much going well right now, and don't want to jinx it.
I'm glad the meds are helping. I tried a low dose of clonidine, but at night my BP dropped way down, and my HR was in the 30's, so I couldn't get out of bed - an especially bad and embarrassing dilema since I have interstitial cystitis and often have to get up several times a night to use the restroom - and can't hold it very well if I can't get up. I am also sick of being sick! All of this seems neverending, and while the symptoms seem to cycle so that I have good stretches of months in between bad stretches, sometimes I feel like that makes it worse - like you are granted a glimpse of what life could be like, get your hopes up, and then have them crash when the symptoms return and you are back to memorizing the television schedule.
I've been getting migraines again, so I am starting to keep track of my BP again, to see if it is the culprit. I've been dealing with swelling, as well, so I am curious to see what your doctor says about that. I see mine next month, so I know they will check everything again for me, but it helps knowing what other people are going through.
I can't believe how many people responded! It helps so much hearing from each of you. To think that last March I didn't know anyone with any of these problems, and now I can talk/write with all of you. I am very gratefull.
I'm sorry about your mom! I now believe I have the hyperadrenergic form of POTS and that it likely explains my various catecholamine excursions from the norm at various times. Since your doctor was so sure- was it from blood or urine testing he/she was sure you had pheochromocytoma? Because if it was, I believe I've read that it is possible to have one apart from on the adrenals, so if they ruled it out because they didn't see it there, it doesn't necessarily have to follow you don't have one. (See PM).
I too have IC! When it gets too bad, I go in for the elmiron cocktail bladder instillation via catheter. I do that because oxytrol seemed to give me more migraine symptoms and I think may have affected my tachy as well & elmiron pills have a host of side effects & it is supposed to be far less of that with the bladder instillations. I also am trying prelief which was recommended to have if I make an exception and eat an offending food. I have had to try to cut out some things from my diet & the diet list I was given was VERY limiting! Add that to my GERD, IBS, migraine trigger food and soft diet restrictions... but things could be worse!
Also regarding the IC- have they definitely ruled out by MRI and cystoscopy that you don't have endometriosis in your bladder? Because endometriosis in the bladder can mirror the symptoms of IC and UTI!
The dr. checked for the pheo by blood and urine. He said he was tempted to do a body scan to check elsewhere, because the symptoms were so bad, but insurance wouldn't cover it at the time; actually insurance didn't cover the entire week I was in the hospital for tests, because it was all considered pre-existing. I see him next month, and plan to ask him what we can do now that I've met the pre-existing time requirements.
I do the bladder cocktails as well. I'm supposed to learn to do them at home, but I don't know how well that will work. They are positive it is IC, because of doing a laparoscopy and hydrodistension, where they showed a ton of ulcerous cracks throughout the bladder. I think they did a cystoscopy at the same time. I can only hold about a fourth of what a normal person can, even under anesthesia - it's just very small and in bad shape. I'm supposed to start Elmiron, but I keep putting it off because the side-effects don't seem worth it.
Right now, things are going very well, with minimal symptoms, and I am just hoping and praying like crazy that it stays like this for awhile. I just accepted a job as a paralegal, and I'd really like for it to be able to work out long term. The pay is great, and I have a lot of leeway for appointments and things I need to do, with breaks to go for walks and an hour lunch. It's mostly sitting, but there are enough things to get up for that I can stretch when I need to, so I think I can make it work. I'm just not sure what to tell anyone yet as far as the whole POTS thing goes. It's bad if I don't tell them and I have a problem, but it's bad if I tell them and they start treating me differently. I figure I'll wait awhile, until they know my work ethic and what I'm capable of, and then clue them in so that if something comes up it isn't a brand new subject for them.
I understand about the food issues. It seems like there are so many things I can't eat! So much for simply eating healthy. Ugh. I deal with GERD and migraines - I wonder if everything is connected - H-POTS, GERD, migraines, IC, endometriosis. It is just so much to have going on in one body.
Thanks for the condolences on my mom. She passed away August, 2006, from leukemia. She was never diagnosed, but it seems obvious she had POTS, as well as diabetes, hyperthyroidism, migraines, asthma, and the two tumors on her ovaries, which happened after a hysterectomy for a prolapsed uterus. Also a lot for one person to deal with. I wish she were here now, because she could help so much with everything that is going on. She was always very supportive in that way.
The bladder cocktail instillations I get have the Elmiron put into them from capsules- that is to avoid the nastiest of the side effects from taking it orally. I haven't noticed a lot of side effect from taking elmiron by bladder, aside from possibly an increase in migraine activity. They started with putting 100 mg in and moved up to 200 mg (two capsules) of the elmiron- they open the capsules I bring after getting them from the pharmacy and put the insides into the bladder cocktail mixture. Plus, they get the elmiron right where it's needed- in your bladder instead of making it go all over your body to get there.
Wow, your mom dealt with an awful lot. It's great she could still be supportive of her daughter even through all that!
I know the feeling of having too much going on in one body, as you said. POTS, Chronic Fatigue Syndrome/Fibromyalgia, Migraines, IBS, GERD, Perimenopause, and I'm sure I've left something out.... Due to health issues, I ended up adopting two wonderful daughters from China. I knew my body couldn't make it through pregnancy and was also worried about their chances of having POTS, CFS/FMS, etc.
Well, you sure got allot of responses since I left a week ago. Interesting to find that so many people have had bladder issues. I had those so bad before my hysterectomy. I seldom have issues now. Except for the fact that as you age, you lose the muscle tone and its a little harder to hold and not leak. As far as the hormones. They can be compounded by a pharmacy in their natural form and used on the skin. It bypasses the liver that way and there are a lot less problems. There are 3 kinds of estrogen. One kind - estriol - actually prevents cancer. It may be enough and not need the other two. It will help prevent vaginal atropy, helps you keep your libedo and keeps you from getting wrinkled. I too have osteopenia, but I'm 14 years out from my hysterectomay and 50 years old. I don't think that's too bad - considering.
I didn't make it out of town, by the way. I had a terrible fall and broke my foot off my leg. Yup, all the bones and ligaments, tendons -foot. It has been terrible. I had so much trouble with the medicines. We were a few hours out of town and I fell. Had to go to two hospitals before I had surgery. Explaining the POTS thing and them all feeling like you're just nuts. Can't take this medicine, can't take that medicine. One nurse wanted me to lay there and not have anything because I couldn't take what she wanted me to take. I was furious. My husband said he'd just give me some left overs from before if they didn't get it right. They finally got it right. But after about one and a half weeks I started reacting to that med. Now I'm just using Ultram 3 times a day. Seem to be doing pretty well on that. The delotin and dememoral gave me severe anxiety and started to not help the pain. It's so frustrating, NO ONE but us that have this understands. There are so few doctors that have even heard of it. I'm dreading the rehab part of it. The lady that came in to teach me how to get up with the walker and to get into the wheel chair, couldn't understand why I was having such problems. Well, I had problems before I broke my foot off my leg. I'm consider completely disabled and have had to use a cane at times because my legs won't work. Some times my husband has to pull me up out of a chair because I can't get up. How am I going to manage learning to walk again with all the other issues? Anyone got some encouragement?
I am soooo sorry about your foot! And about not making it out of town - and the nurses, and the pain meds, and the problems getting up - oh my goodness I feel like I am reading my story and just want to cry for you! I reached behind me in the car last week to hand my son a sip cup, and managed to dislocate a rib, tear my rotator cuff in my shoulder, and strain my shoulder and neck to where they are having severe spasms. Went to the doctor and explained what happened, about POTS and the chemical sensitivity, especially to pain meds, and he ended up not giving me anything for pain (though he did prescribe muscle relaxers, which I am grateful for and haven't had a problem with) and I overheard him outside the room saying that diagnosing patients with POTS was a new fad, and for the other doctor not to take it too seriously. Made me mad, but they aren't my regular doctors anyway, so I've learned to just let stupid comments like that go. There are other options for pain meds, I don't understand why my doctor and your nurse both decided we were just better of in intense pain. The last nurse I tried to explain the medications I've had reactions to just looked at me like I had declared I moved here from Mars.
I've had problems with my legs on occassion, too, and have needed my husband's help. Be patient with yourself, and ignore the stupid, ignorant people who don't understand what you are going through. There are a lot of people rooting for you, who know exactly what it feels like to have to reteach our bodies something that should be simple. It should be simple to stand up, but sometimes its just not, and even though it stinks, we have to hold on to the fact that this, too, will pass, and if we are in a bad period now, that means a good period is coming. You have made it through a lot, and you will make it through this. It doesn't mean it won't be hard, but it does mean there's a light at the end of the tunnel, with a lot of people cheering you on to keep pressing on. And if you're feeling down and frustrated, and need a good rant or someone to cry along with you, we're here for that too. Good or bad, we are all living through this together. One statement I used to tease myself with when I was having trouble even with a cane was, "One small step for mankind, one giant leap for a person with POTS". I don't know if anyone else will find it funny, but it used to always make me chuckle, and kind of keep things in perspective. I wish I could give you a hug. How about a virtual one? <> Hang in there.
THANK YOU!!!! I'm all teared up now. Thanks for the encouragement and for helping me not feel soooooo alone in this. I've read some of your other post in different places and saw you had a bike accident. So you do know what I'm going through. I'm not athlectic at all and I'm overweight and breaking my foot off is not going to be at all easy on me. I'll get stronger, and hopefully lose some weight -- but wish it wasn't for this reason. It seems like at times you get some things figured out and something else puts a monkey wrench in it. My wonderful husband has been great. He is all the things I'm not. I'm really relying on his strength. Both physically and emotionally. I'm very fortunate. Been married 30 years and still in LOVE!!!!!
I'm finding the Ultram to be pretty effective. I'm taking an Advil every once in awhile. I too have migraines and the Advil helps that. I have Ehlers Danlos and it causes muscle spasams and pain and have Fibromyligia. They had given me Ultram for those things but I was only taking one a day. They said I could take 3 a day and so I'm doing that with my foot/leg. It has some antidepressant effects. And I really need that right now. Last night I took l/2 of the demeorol and l/2 of a phenegan and slept like a baby. Haviing some problems with the POTS this morning, but feel it was worth it to be out of the pain and sleep well last night. When the delaudtin messed me up in the hospital, they gave me Adavain --an antianxiety med. Boy did that help. I think it helped the POTS too. Anyone had any experience with that? Thought I'd ask my Dr. --when I get one-- about maybe having some on hand for emergencies.
Heidi, I thought of something else, I don't think I've told you. Because of the adrenal dysfunction that we have; they give me cortisol during and before surgery. It helps support the adrenals due to the stress that you're under. They have used that on me with my last few surgeries and it has made a HUGE difference. You don't go so hyper to everything. Ask your Doc about it. After my hysterectomy, they had me take a small amount of it via pills after surgery.
I swear, I had all the bladder issues that allot of you are going through before my hysterectomy. Don't have much problems now. Sometimes I get the urgency and the feel of the start of an infection. But, I found the miracle cure --------fresh PARSLEY!
I used all the meds had uretha stretchs did everything the docs said. Nothing worked. Get fresh parsley, put it in water and boiled it, until the water gets real green. Drink it everytime you think of it. It numbs the pain and heals up the bladder. If I can't get to fresh parsley, like I'm on the road -- I carry Parsley caps with me. It doesn't help as well but it is better than none. It is high in potassium and I think helps balance out your electrolytes when we get out of balance. I also use Emergen C for that. It's easy to keep in your purse and less calories than Gaterade without the corn syrup. Hope this helps others as much as it's helped me.
Heidi, I was in the legal field too. I found it to be very stressful. Hope you handle it better than I did. It's a real competive field. Remember, stress makes us worse. I'll be rooting for you. Do you have a sitter for your son? Or, can you do it from home?
Thanks for the Hug. I love them, even if they are only virual ones. Here's one back to you!!!
Ooh, I am definitely trying the parsley bit. I prefer to go as natural/herbal as possible with how hyper-sensitive I am to chemicals, so that sounds fantastic. My husband started selling herbal/natural diet products, so I always carry the powder electrolyte drink mix from that.
My new job is quite stressful, but I seem to be doing alright so far. It is mentally stressful, but physically not, and most of it I enjoy. I have a feeling the attorneys may have plans to put too much on my plate (they want me to learn the case management side and the litigation side, while you typically only do one or the othe), and while I appreciate their confidence in my mental abilities, I think it may prove to be a bit much. We will see how everything works out, but if it's horrible on the stress side, I might see if I could switch to part time later. My son goes to an at-home daycare, that is run by lifelong friends of my husband, Josh. Josh just got a new job as well, tarping trucks, on a rotating shift. Not sure how well that will work either, but it means that some weeks Caleb (my son) is in daycare all day, and sometimes he is only there a few hours, but on those days Josh and I don't see each other, which is so very, very hard. We also have a lot of family in the area, and have parents/grandparents/siblings who will watch Caleb for a day on occassion, which gives him more one on one time, and really makes everyone happy. When my dad and stepmom watch him I go over there for lunch, and get to play for awhile, which I love.
I love to hear you say how much you are still in love. My husband is all the things I am not, as well, and I love him dearly for it. Our first date I had an episode, and he just got down on the floor and kept talking to me like nothing had changed, and kept making me laugh. Before we learned I had POTS, last March, we had spend several months honestly thinking that I was going to die within a short time, because I had been on medication that made my BP dangerously high, had my heart going crazy and my chest hurting most of the day, had suffered a bad miscarriage, had been forced to leave school, and could barely do anything but lay on the couch without passing out. Even through all of that, Josh was incredibly supportive, and his love was very obvious, just looking at him and seeing how many little things he did throughout the day to try to make things better, and try to make me smile.
It does seem like we figure some things out and others pop up - like figuring out what was wrong with my heart, only to be diagnosed with IC and endometriosis, but I've learned that this battle can only be taken one day at a time. I could wake up tomorrow, feel great, go to work, have a ton of energy, and never think twice about whether I might pass out or need to be careful standing up. Or I might wake up like I did this morning, with my BP 85/75 and my HR in the 130s before I've even done anything. I just never know. If I focus on the fact that tomorrow might be bad, then I can't enjoy today, and if today is the day that is bad, well, then, I hold my hope in tomorrow and try to find something small that is good about today, that at least makes it a little more okay. One of my favorite songs has the line, "you've got to face the clouds to find the silver lining", and days like today that's true. Today I've mostly spent on the couch, and though I could have that fact make me feel miserable, instead it reminds me of what things were like a year ago, how much has changed since then, and how many things I still have to look forward to. I'm still frustrated that my kitchen is a disaster because I couldn't stand to clean it, but there's a balance. I might just need to go buy paper plates. :)
I do have long entries on here. I hope no one minds, I just process information best while writing, and there are days where a lot is going on in my mind. I am so grateful to be able to talk about this stuff, and not feel like a freak on display, or a guinea pig.
<> back to you, again. I hope your foot is doing much better. :)
I forgot to mention, I've taken Ativan (lorazepam) before. It does help quite a bit. I've found that if I'm having a day where I am super sensitive to everything and keep jumping and twitching a lot, I can take some of that and have everything calm down, yet still be able to think straight and function. It's been hard for me to get prescriptions, because of the fact that it's addicting, but I am going to ask my cardiologist if he will write a new script, as I have yet to find anything else that helps so well. I figure the damage of the adrenaline bursts is worse than the possiblity of forming an addiction.
I take a low dose of lorazepam every single day, have done so almost without any breaks for about a decade, and will continue to do so long into the forseeable future. While some doctors aren't over-the-moon about this, my thoughts on it are as follows:
1. If I were displaying truly "addictive" (vs. medically dependant) behavior, I'd be going after steadily increasing doses of it, which has not been the case.
2. The medication works better to control the symptoms for which I take it than anything else I've ever tried, and anything else the doctors have been able to offer. The fact of the matter is that benzodiazepenes are perfectly targeted to alleviate my symptoms without causing a host of side-effects or interacting with the other medications I need to take.
3. Diabetics take insulin every day for the rest of their lives and aren't considered "addicted." People take thyroid medicine every day of their lives. Narcoleptics take medicine every day. Etc. Etc. Etc. Some conditions need to be treated permanently, and I don't think my symptoms are any less worthy of treatment than any other chronic illness. I have a chronic illness and I'm deserving of relief.
I'm fortunate enough to have a team of doctors that is supportive and understanding of this. I hope you find a sympathetic ear in your doc.
There is something call mast cell activation with POTS. Not an expert but if you get the flushing with your POTS, a histamine level and I believe 24 hour urine collection will pick this up. You would benefit from H2 histamine blockers if it shows up positive (meaning a level greater than the normal seen in these test). Should do the test when you are having the flushing. My daughter has the allergies and flushing but both hers were within the normal limits. She did not have as much flushing during the testing.
i had my histamine levels checked while in the hospital. I have bad allergies, but the test was within normal limits, and it was done right after a very bad episode on the tilt table test.
Good point! I am hoping my doctor will be understanding as well. My gynecologist and GP weren't willing to prescribe it, but I don't think either are all that familiar with POTS. I asked the GYN because it's always worst around my period. It's good to know you've been able to have a lot of relief by taking it.
Quercetin is supposed to help histamine levels. I know with myself -- food allergies play a big part. Taking quercetin seems to help allot of things. Just a natural alternative. Also, you can get H2 blockers over the counter.
I read beta blockers make hyperadrenergic form of pots worse. Salt is for the other form of pots with low standing blood pressure. Clonidine helped my hyper pots but made me tired. I have a history of severe endometriosis and fibroids but it has never been looked at as a cause? Any body else have sweating with it? My symptoms are worse after walking when I stand still?
Well, iron deficiency anemia can cause palpitations and shortness of breath. I have sweated before with the tachycardia of P.O.T.S.. Perhaps your blood is pooling in your legs more when you stand still than when your leg muscles are pumping as you walk. I had a doctor tell me to pump my leg muscles to act kind of like the heart, trying to pump the blood back upward or something.
I have been going through the differential for POTS They have ruled out Pheochromocytoma I have orthostatic hypertension with it. They have me on clonodine Patch which was initially effective but it seems to be less so now. I am sensitive to the betablockers and calcium channel blockers, they cause leukocytoclastic vasculitis. I was chonically anemic and hypovolemic due to mennorhagia but had a partial hysterectomy (they left my ovaries) 2 years ago over all it was very helpful. With normal HGB the symptoms were improved. Considering the flushing I already have when I eat I would hate to have parted with my ovaries. Sensitivity to beta blockers seems to be a common theme here what reactions did those of you that have this experience?
I had a complete hysterectomy myself, having had severe endometriosis, which included an endometrioma inside one ovary. I learned leaving the ovaries in usually winds up in another surgery a few years down the road, removing them as well. But you do have the benefits of the estrogen they are producing for now, so that's a plus.
Also, I got anemic long after my hysterectomy and they did not discover a definitive cause for it. So, if you feel symptoms worsening and more tired than usual, you may want to get your ferritin and blood iron checked despite your partial hysterectomy. My hemoglobin came back normal, though my RBCs were down. Another time, while still mensing, I went iron deficient but my CBC was still normal. However, I still noticed an increased tiredness and I thought a worse tachycardia at the time.
When I took a generic lopressor, I noticed a tingling, flaccid type feeling in my feet and was more tired & I think more light headed.
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