I have recently been diagnosed with POTS.I have the racing heart and sob but no drop in blood pressure. My appointment with the specialist isn't until June. I am 51 years old and just got tested for allergies. I am highly allergic to trees and grasses. It was suggested that I get allergy shots. I know that allergy shots cause a histamine release that dilates blood vessels and could potentially cause a drop in blood pressure. Is there any information out there if people with POTS should or should not get allergy shots?
Thanks. My allergist is going to look into it for me. I am a Registered Nurse so I have a pretty good understanding of what the allergy shots do to the body. Are you very symptomatic with your POTS? The only problem I seem to have is my heart races up ot 120-130 every morning for about 20 minutes and with this I have mild SOB. I was hospitalized for 4 days in December with many PVC's (heart arrhythmia) with associated Abdominal pain, nausea and dizziness. They also noticed my increased heart rate and that was when they became suspicious for POTS. The only new problem I seem to be having is that I always get pretty bad abdominal pain and nausea for 3-4 hours if I eat eggs! I have been eating eggs all my life. I did get allergy tested which was negative. One other time I got abdominal pain without eggs so I am not sure what to make of it. I never had trouble with my stomach before and I eat a very healthy diet. I am getting a colonoscopy and EGD this month so we'll see if they find anything. What have your symptoms been? If you don't mind, how old are you? POTS usually affects younger people so I am surprised I got this so late in life.
I know taking antihistamines can make the tachycardia worse. I tried once to get tested for mast cell activation disorder, but my doctor at that time did not see the point, as the treatment if I did have it was medication I cannot take.
I'd ask the allergist about the possible implications of allergy shots if I were in your shoes.
When I went to an allergist and he suggested allergy shots, I didn't even know about the shots dialating blood vessels. My concern, besides investment of money, time, etc., was what if I had a bad reaction to any of the shots? They informed me what they do for that was have patients with a bad enough reaction take antihistamine medication, which would make my tachycardia worse. While they talked of trying to like a fingerprint make the allergy shots tailored to you, this was very concerning to me.
You might consider avoidance therapy during peak allergy seasons for those trees and grasses if you think the allergy shot route won't work out for you. I chose not to get them myself.
RE: your blood pressure- it might be you have the hyperadrenergic form of P.O.T.S..... I've actually had my blood pressure spike with standing because of my P.O.T.S. and I believe hyperadrenergic is the form I have.
I am not overly symptomatic with POTS. I have tachycardia on standing which is bothersome. My energy level is very low most of the times due to the elevated heart rate. I also have exercise and heat intolerance. It is hard to differentiate some of the other symptoms because I also have a brain malformation, Chiari 1 Malformation, which causes many symptoms as well. I also have headaches, neck/should pain, double vision, stomach issues diagnosed as IBS which I think are related to both POTS and Chiari, low back pain, join pain/popping, and more I am sure I am forgetting. Oh and I also suffer from allergies and sinus issues obviously.
I have not had any tests done by the electrophysiologist as he said that the medication is the diagnostic test at this point. Thankfully I was able to avoid a Tilt Table Test as I hear these are extremely unpleasant because he said that even if it came back negative he would consider it a false negative. I think I will need a holter monitor test here soon since the heart rate is not under control. My standard by is 95/65 with a resting heart rate of about 65-70 it will go down to 60 if I am sleeping or really not active. Upon standing the BP normally goes up a little bit and the heart rate goes up to between 110 and 130.
I went through TONS of tests for my stomach issues a couple of years ago and we never found out a reason for them. Now I realize that both Chiari and dyautonomia can cause these types of issues.
I am only 19, so I am sure that affects me a great deal as like you said it is common in younger people. I have been experiencing symptoms since I was about 14, but I was just diagnosed a month ago. I am currently taking Midodrine 10 mg 3x a day and Fludrocortisone .01 mg 2x a day (only for a few more days then down to once a day). I’m sure these will change but I was trying to give you complete picture of me :)
Thank you for that information! I will get off of the antihistamine that I am taking daily as it only helps marginally and I was planning on getting off of it anyways with the allergy shots now starting to kick in and the ENT recommending I do.
I hope you will find you don't have a severe enough reaction to any of your shots that you will feel the need for them.
I think I was told I can take Claritin at one time (not to do with the allergist I was talking about) I just was remembering, but when I've tried that in the past, I found my nose still had congestion and I felt no appreciable help from that medicine.
I have been having some issues with my stomach so I am scheduled for a colonoscopy and EGD (upper endoscopy where they look into your stomach from your mouth). I haven't started the allergy shot yet but my allergist said that on the days I get the shot (once a week), I need to take an antihistamine because since they are injecting into your body what you are allergic to, you will release histamine and all the cascade of symptoms that follow, so the antihistamine calms things down, just like when your exposed to environmental allergens. I don't take antihistamines on a regular basis, just when I am symptomatic. I have taken antihistamines before without a problems. DON'T take any antihistamine with pseudophed such as Allegra D (D stands for decongestant) because that will make your heart race. it acts like a stimulant. I take regular Allegra or regular Claritan.
I have started to exercise but I am going very slowly. I have an elliptical machine in my house and I go on it for only 10 minutes then I do stretching for 15 minutes 5 days a week. That's it. I did this for 7 days and am doing okay except for some soreness. Now I am going to increase cardio to 15 minutes and do my stretching. Each week I will increase the cardio until I reach 30 minutes then stay there and try to add other exercises depending how I feel. We know that POTS has a lot to do with deconditioning and I feel if we take baby steps with exercise, we can build our tolerance up gradually. A stationary bike may be the better way to go if standing is too much.
I also completely changed my diet since June of 2012. I was so fatigued at that time, taking naps every day, no energy. At that time, I didn't know anything about POTS. I was short of breath and felt I was just out of shape so Slowly began exercising and changed my diet. After a few months I started feeling better and lost 20 lbs. I am at my ideal weight now. Then in November 2012, my sister came to visit, I stopped exercising and wasn't eating correctly. I had a flare up of my Trigeminal Neuralgia and had to go on prednisone then at the beginning of Dec. I started having lots of palpitation (PVC"S, a heart arrhythmia), abdominal pain, nausea and hypoglycemia and feeling very anxious all at the same time. (I also have reactive hypoglycemia which came a couple of years before the POTS). I had these episodes 4 times and finally went to the ER. They admitted me for 4 days and said I should go for autonomic testing and that is how I found out I had POTS.
I have noticed increased heart rate in the past with my own dysautonomia with Benadryl and chlorpheniramine-maleate. The latter was circled by a doctor as something I could have that would not affect my heart rate. I noticed my heart rate increased with taking it and called and spoke to a pharmacist who informed me it too could cause an increase in heart rate. I'm glad you've found ones that work for you and are not causing you problems.
I also was not allowed to have a number of urology drugs due to the adrenergic affects they have on the heart.
There are some who have posted diagnosed with orthostatic intolerance who, prior to this ailment, had previously enjoyed a lot of athletic activity, so while sometimes, deconditioning is a problem with people who have this (and probably most of the time as time goes on with dysautonomia) it was not always initially the case.
I'm glad you are finding diet and exercise valuable with your medical condition. What dietary changes (aside from getting down to your ideal weight) did you make specifically where you noticed improvement in symptoms?
My gastro effects are my most bothersome symptom, besides the severe dizziness and huge increase in HR upon standing, it jumps at least 30-40 beats within minutes. I faint a lot.
I would love to hear your diet changes too. I realize there is no one fits all fix, but we basically have the same cause, dysautonamia, although symptoms vary greatly.
My stomach issues are slow to digest food, gastro paresis. I feel like I have a bowling ball in my stomach after eating, even if I only take a few bites.
Domperidone helped a lot. It's not FDA approved in the USA, but available at compounding pharmacies with a prescription.
I have nausea 24/7, haven't found anything that helps that. Vomiting during flair ups, but during non flair ups, I still vomit 3-4 times a week.
Contispation so badly I must do preps mainly.
I have had several scopes. I was very surprised during my first one. They diagnosed severe GERD. I never have heartburn. They said I must do it like crazy at night. The lining of my stomach has areas of bleeding.
I had been on no medicines reguraly with my first scope, which ruled out medications being the cause.
I have started a food diary. I assign a number 1-10 on level of nasuea prior to eating, level after, plus level of sleepiness the food causes. Also what I ate, and what time.
I am only a couple weeks in on that, I haven't found any particular food that's "good", but ruled out pizza, even a couple bites, really fast!
Would love to hear others with gastro issues weigh in on what helped for them.
I didn't exersize prior to my overnight pots onset, but was working at a hospital, on my feet, 12 hours a day, 6 days a week. I thought of trying a stationary bike. I cannot stand at all. 1-10 minutes max.
Hope everyone is having a decent week, or day at least.
I was diagnosed with I.B.S. while in nursing school as a teenager. Years later, I was diagnosed with G.E.R.D.. I also get migraines and have TMJ dysfunction as well as I.C. besides P.O.T.S. and I.S.T.- all these initials! Diet for me is a real challenge.
There was a period of time where I was throwing up and having diarrhea a lot. I had got scoped back then and they said my stomach looked 'scraped', which we figured was from me throwing up.
G.E.R.D., I believe, can have nausea as a symptom... what are you taking for the acid reflux? I am a the top of the ranitidine dose at 300 mg twice a day and take O.T.C. liquid anti-acid and suckable tablets to augment, along with generic Metamucil (which I was told in the past could help with G.E.R.D.) and generic Miralax to try to help with constipation, etc..
I sit around after my main meal for quite a while mostly and usually because of my heart situation with trying to digest. I know some meals I eat I especially want to do this- like pancakes w/syrup, etc..
My abdominal symptoms were diffuse abdominal pain around the belly button area, nausea and dizziness. This happened at the same time I was having the PVC's and my blood sugar was dropping. (My blood sugar drops multiple times a day and I eat every 2 1/2 to 3 hours.). The only other time I noticed that I got Abdominal pains was 1-2 hours after eating eggs. It would be the same diffuse abdominal pains, nausea, (no dizziness or PVC's). The pain would be so bad, I had to lay down and put a hot water bottle on my abdomen for 3-4 hours. Then it would just go away on its own. At first, I didn't make the connection to the eggs, because I have been eating eggs all my life. Then I purposely ate egg, fried or scramble to see if it would happened. I did this about 5 more times (self torture I know!) because I had a hard time believing it was the eggs. I went to a GI doctor and told him about this and since I never had a colonoscopy, he decided to do that and an EGD at the same time. This is scheduled for March 15th. Then I had allergy testing to eggs, soy and milk and all came back negative. No doctor can give me a good answer except to avoid eggs. However, if I cook with eggs like in a muffin mix, I don't have any symptom. The doctor told me they only test for specific proteins in the eggs and it could be another protein I have a sensitivity too. I do also keep a food diary of any pains I get and see if I can find a common culprit. The pain and nausea happened one time when I ate tofu. I would recommend that anyone having GI symptoms to at least get tested for the common food allergies such as wheat, soy, milk, nuts, eggs etc and get tested for lactose intolerance so at least these can be ruled out as best we can with todays technology.
Wow, that's weird about the eggs- did you try free range ones as well as non-free-range chicken eggs? I enjoy eggs a lot and lately we've gotten most of ours courtesy of our friends who have free-range chickens on their farm. I wonder if this has translated into a problem with getting flu shots for you (or do you never get those)? When you'd cook the eggs, was there always a specific spray or oil you'd use to fry/scramble them in?
I got tested for food allergies and it was suggested to me that something such as celery, which was one of the things I came back as allergic to- if it was well-cooked, I'd probably not have a problem with it (not the most severe in the range on that). I wouldn't be eating raw celery anyway because of my TMJ dysfunction, so that wasn't a big deal.
I try to avoid soy now because of my I.C. and milk- I've been lactose intolerant in the past to that and more recently, it's really bad for my G.E.R.D., so I avoid it. I use Rice Dream now on my cereal.
Your practice of eating every 2 1/2-3 hours sounds like you are doing small, frequent meals- an excellent tip for someone with chronic nausea, I think.
I have autonomic dysfunction, large and small fiber neuropathy, neural junction disorder and severe allergies. I have been on shots for many years and cannot function without them. My main allergies also are trees and grasses, also cats, but I am now not allergic to grasses due to desensitization
I do not have POTS or the fast heart rate but have labile BP and orthostatic hypo tension. One of the main things emphasized to me by my allergist was I had to avoid Beta Blockers to be on the allergy shots. The reason for this is that these medications can make less effective emergency medications for severe reactions to the shots. They always have you wait 30 minutes after a shot to make sure you are ok. I have only once had a reaction to the shots themselves over many many years. Most people are able to get to one shot per month within a year or so but it took me almost 5 years to get there and I do not think I will ever be able to stop the injections. This is rare but it happens to some. I have extreme reactions to perfumes and smoke as well and sometimes have to go on prednisone if I am exposed to smoke from wildfires.
LivingHope mentioned celery. It is related to the nightshade family and causes allergies for some people. It seems like such an innocent addition to salads!
I couldn't function without allergy shots. Even with antihistamines and several types of inhalers including nasal steroids I just wanted to submerge in a swimming pool and breathe through a straw to get away from pollen. Mine are all year long allergies and it doesn't seem to matter where I am there is always something that I am allergic to.
I do hope you find something that works for you. I stay on nasal sprays and antihistamine year round using albuterol when needed and prednisone as a last resort. I get my shots monthly but more frequently if needed.
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