Went to see the crappy local Neurologist about my headaches today, needless to say I now have a pounding headache. My HA's worsened recently and I followed up with my eye dr. due to blurry vision and double vision after taking Leviquin (had a tooth extraction turned sinus infection). I thought the antibiotic messed with my head and CNS system. I had severe brain fog, memory loss, HA's pressure pain and pain with coughing worse then normal. Eye dr said go see your neuro and see if they will do a new brain scan since my right eye is repeating a slight loss of peripheral vision. She said there is stuff in your right eye that we want to keep an eye on, but I am pretty sure she is sure its not Glaucoma.
So I'm in my appointment earlier, they didn't take my weight or bp or pulse. Just asked what meds I am on then the dr. came in. I told him what brought me in and tried to remember everything (should have taking notes but I don't think it would have helped) I am having a lot more triggers for migraines then I used to like exercise intolerance. Also my pulse has been too high then too low at times. My bp is usually too high or too low (usually low). I have been dizzy almost like I am about to get vertigo sensations. I have no car right now so have had to walk to the store and find im feeling "out of it" with head pain and dizziness and I keep thinking it will get better with endurance but its not. Personally, I think I am having autonomic dysfunction with how up then down things have been. Even my blood oxygen while walking was 90 and pulse was between 135 and 158 just walking a slight incline. I am 29 not over weight, just had my heart checked, I dont smoke. I dont know why my blood oxygen has been 90. Of course if I tell him all this he would think I am crazy but call me what you want, I am educated!
Anyways, He says I am having rebound headaches from trying to rid my migraines with caffeine and Tylenol and its just causing a cycle that I have to break by getting rid of the caffeine and the Tylenol... My daily savior's. He suggested Gabapentin or wht ever and I gave him my list of reasons why I was going to take any antidepressant based meds (as I have done so many times before). He was like well how do you want me to help you if you wont try these meds? I said cant we get a new brain scan like my eye dr. suggested? No! that's not going to do anything and you need to take something daily to prevent them blah blah blah. So in the end I gave in and he actually offered something that wasn't an antidepressant so I left a little hopeful other then the whole cut out my coffee and tylenol. Well that was short lived, asked the pharmacist and wasn't happy with what I realized. I told the pharmacist I get low blood pressure frequently and I said whats too low? He said normal is around 130 over blah and low is anything under like 100 over 50 or 90 over 50, what ever, you catch the drift. So I said, so if I take this and my bp it low like 95 over 50 stop taking and call the doctor.
On to the question. I have been taking my bp and blood oxygen levels with my dads equipment and decided before I take something that lowers my bp I am gonna start a journal. I took it at 3:11 and it was 111 over 70 pulse 83. then I took it at 5:28 and I had just walked the dogs around outside and my head was pounding and I felt awful it was 98 over 56!!!! 95 pulse! And he prescribed me 120mg extended release to take before bed every night. I am seriously afraid I would die in my sleep! Sorry so long, hard to explain. Thanks for your time Stacey
I was put on Verapamil a few years ago for Migraines as well and like you was scared as my bp runs on the low side. I montiyored it and never had any changes. That is just my experience with it. I would say if you are that nervous maybe u should call the NL and see what they say. There may be something else that you would feel more comfortable taking. Good luck
Hi Stacey...so sorry u r having these issues and I agree it does sound like POTS or some other Dysautonomia type of issue.
U r lucky u have access to equipment to register these levels other wise u would not have a clue as to what is going on....
I understand ur concerns with this med....especially since u have a journal to show the fluxuations....deff call ur Dr again and show them the journal.
As for the MRI, u may have to use a little white lie and say u fell and bumped ur head....???? Not sure y the Dr si giving u a hard time, could be he needs to rule things out in this order so it is covered by ins?
Just a thought?
Keep us posted...sending u good vibes and healing MoJo ~~~~~
Thank you Selma, your always there when I need you! Its funny you say that about trying to get a Mri, I actually did fall and hit my head (it was just a long time ago) I told him that I am pretty sure I lost consciousness. I had been trying to remember anything like that happening when I was younger then I remember, and most of it very clearly.
I was in between kindergarten and 1st grade ( I remember that because of the house we lived in and the school age when I left) My mother was in the basement doing some remodeling so they couldn't hear me. I was playing in my mothers shoes and wanted to show her so I began to go down the wooden stairs and remember slipping then I don't remember a thing until I was upstairs on the couch with an ice pack on my head. The basement had 4 removable stairs at the bottom that were moved out for the remodel so my plan was to stop at the bottom then get mom's attention but I fell instead. It was a concrete wall at the bottom of the stairs. I asked my mom about it and she doesn't really remember but I find it strange that I remember everything up to falling. We lived in a house where my mother took care of a man with MS so my mom was always doing more then she could handle so I don't blame her for not taking me to the doctor. I do remember having problems swallowing and going to the bathroom after this and I am just recently putting all of this together and realizing why I was sick when I was a child. I realized something was wrong one day we had gotten mc donalds and I was trying to swallow a chewed up french fry and I couldn't no matter how hard I tried. I also choked on stuff a lot. I chocked on a whatchamacallit while saying Bramuda triangle lol Funny now, scary then. My mom freaked out and they took me to the doctor and came up with nothing but stress from our living situation so we moved out.
So I don't know what to do. I called the nurse and told her how low my bp was and she though that was with the med and I clearly said on the message that I had not taken it yet and it was as low as 98 over 56 or what ever. She said well the doctor know this will be tough on you this next week getting off of Tylenol and caffeine and I was like yea I am miserable and afraid to take the med. So I told her to ask him if I should even try it. Well see how that goes.
I had a panic attack yesterday and cried all day and still having a hard time now. My head hurts so bad from crying that I have double vision and feel like my balance is all off. I am getting fits of almost uncontrollable anger that ends with me breaking down in tears. I tried to talk to my boyfriend and my primary care doctor and they both want me talk to a therapist. I don't think that's gonna help when I want to ask questions and get answers. Sorry so long, im just really having a hard time right now.
Well she just called back and said there isn't really any other options, I said I am not calling for options I'm calling to confirm safety with my low bp. She said he really wants me to try it for a couple days so I just did and if I pass out and hit my head its on him!
LOL...u know the more I learned about Chiari the more I remember things like that too...several spills where I hit my head....ouch...so I am sure it was a trigger...but from what I can tell I always had symptoms....even from things my mom said about me as an infant.
Getting back to u and the fall I am sure it triggered ur symptoms as will ne blow to the head and concrete,,,,,ouchy...so, u may want to try those meds, but have someone keep an eye on u.....
Wish there was something more I could do or say for u Stacey....I hope just talking about it will help u some ((hugs))
So my headache has calmed down but I attribute that to the Physical therapist I saw. I took the Verapamil 1 day and my vision has awful with blurriness and double vision. BP dropped to 78/56 so I dont feel that medication is safe for me. I also have an increase in my ibs symptoms after taking it and still so I think that's enough to not take it. The neuro said he didn't think they medication caused the double vision an thinks I should be evaluated, Im not sure what they mean be evaluated, should I go to the hospital? Maybe ask for a second opinion to get a referral to a different Neurologist?
U may want a diff opinion, have u tried a neuro optho for the vision issues?
What do u mean ur IBS symptoms increased...and is that a side effect from the med?
Since u have IBS have u tried probiotics and magnesium? I have and what a difference...I only have IBS flares with drastic weather changes...I feel somewhat normal now....if I run out of either the probiotic or the magnesium I slip back to the old IBS issues.
I went to my eye dr. and she said go see my neuro, He then told me to ask her about the eye things. So they are giving me the run around. My eye dr. isn't a specialist so I just keep getting bad luck.
And yes my IBS has been inflamed and he told me it can cause constipation but I am having spasms and nausea. I love probiotics! I like the Glen oaks yogurt drink, has about 11 different types in it. I just drank a whole bottle over 3 days lol. I was on a crap load of antibiotics so my Gastritis and IBS were all messed up from it, I had just started feeling normal in the tummy and then after the med its been flared again. So I really feel its the med. Ill have to give magnesium a try, thanks again Selma!
Sounds like POTS to me. Def Autonomic dysfunction. Pots ***** for lack of a better word. Not very many good docs out there to help- especially after diagnosis. Trial n error n a lot of crappy meds with crappy side effects. Also, for me, cardiac rehab n other things... Salt tablets, h2o pushing, elevated bed, waist high rx compression stockings...... On n on n on... I've been sick like this for 2 years, no ms, no lyme disease, no other anything-- but I do suffer from migraines with visual over stimulation, dizziness, no pain at times, sometimes weird pains, every day for 2 yrs. Don't know y this happened. I'm a patient at vanderbilt in Nashville and at Cleveland clinic AND 2 cardiologists here, now an extra neuro doc recently- he works with vestibular issues especially related to migraines (n other reasons), any way, trying not to give up hope, but if u can find an actual reason for the pots or dysautonomia, then sometimes easy fix, 50% is idiopathic- no reason found- 'luck'- my life has changed dramatically. 4 kids, nurse for 10 yrs, I'm still a mess... I actuality got better - NEVER EVER the same tho- then huge setback now more tests n more n more.... Pheochromocytoma, carcinoid, mast cell activation, ...... I have pots. I have migraines, awaiting mcas results, just dealing with the new me, praying, take it easy! Live life at your own pace- don't settle for answers u don't agree with, counseling for chronic disease, duh, u may get psych issues from this debilitating issue- but that's not where it starts. Drs like to blame psych when they can figure it out. They're so smart how can it not be psych issue if they can't figure it out with their great minds- they only have 15 mins to figure it out anyway, u becoma problem for them. They'd b different if it Eeee them, but its not them, its u. Be an advocate for yourself. Listen I've seen it. I've worked with drs for years. Some are good, bad, slow, stupid, too quick, caring, kind, etc. Just like anyone else u work with. Get one who'll listen n do whatever. But then accept, do the grief cycle, n love every min u feel slightly normal. Oh do I feel for u. My prayers are with u no matter what... EVEN migraines n not POTS, no matter what can change your world- n u already no that huh! Take care.... Best wishes... Lots of prayers...
N BTW I'm on verapamil for heart rate control AND migraines-- now upped the dose... N yes my blood pressure n heart rate varies sometimes 80s over 50s n upward of 180s over 110 -- this is at my worst, usually n ER for heart rate at these times tho. I do NOT have high bp, these are spikes related to dysautonomia and possibly mcas. My bp is usually on low side. I have held my verapamil once at night due to low bp, however high hr and migraines worse next day- could b coincidence, who nos:( Sometimes think verapamil helps hr, migraines, sometimes not. Idk. I just dont. But your not alone, for sure.
Thank you for posting on my thread. It really helps hearing from another person that I am not alone. I appreciate all of your words,
Lately my bp is so low and this heat is just draining for me. I get out in the heat an I sometimes dont even sweat! its like my body is not reacting by sweating to cool me off. Then I get so light headed, (squatting and bending are a awful) I cant take my muscle relaxers cuz even if I take b4 bed, I wake up with low bp and light headed so its either take my anxiety meds or muscle relaxer but not both. My stomach spasm meds even have a heat stroke warning, so those are out. Only can take that when my IBS is so bad the benefit out weighs the risk. I feel very alone and it does weigh on me mentally. Where do I go for a diagnosis of this if no one understands it? My pcp is very nice but I am not sure how to get anywhere with these dr's. He didn't even know what a connective tissue disorder was, I asked about a test for it and he was like what are you talking about? I might pull some info off a reputable web page to give and educate him. He seems open-minded enough to learn and listen.
In the meanwhile, my headaches are giving me blurry vision/ double vision bad! If I get a headache, I'm guaranteed to have blurry double vision. Almost a brain fog with it as well. I recently saw my eye dr and she said that prism glasses would likely not help me, that it would weaken my eye muscles or something like that. She said talk to my neuro who is a jerk so I get to deal with living with this new symptom. And no answers to why. I even tried to seek counseling recently for my now constant negative outlook on life and I was turned away cuz I was not sick enough to receive treatment at that place. Not good to turn some1 away looking for help, it never helps the person, only makes things worse. I am in the middle of waiting for social security hearing currently and I need documentation or diagnosis of these things before i have a hearing date so i actually win my case. At this point the dr.s have worked harder to disprove any medical evidence I have. Thank you for your advice, I will try harder to enjoy the moments im feeling good. I have always had a hard time enjoying myself, it just seems to be getting harder with these constant problems reminding me that I am limited to what I can do about my life. Waiting on social security is not helping either. I just turned 30 and am filing for ssd? Not where I wanted to be at 30. I keep wondering where the last 10 years of my life went. Seems to have passed me by.
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