Chaos

I find I get nasty headaches on allegra at the OTC dose. Personally claritin has worked best for me. But like everything else, it was trial and error to figure it out...and a lot of headaches and weight gain (on zyrtec and xyzal) while getting it sorted. Hope you're feeling better today.

Freaked- when did you get sick originally? There has been some interesting research coming out of Stanford and Columbia Universities recently talking about inflammatory markers that are elevated (other than ANA, SED, CRP) in ME/CFS patients, especially in the first 3 years after illness onset. They aren't ones that are usually tested for in the doctor's office at this point but may be in the future. But the point is, that there is clearly some inflammatory process that is set off and may be the cause of these low grade fevers in people initially. I ran low grade temps for the first couple years after I became ill and now I usually have a very low body temp. I haven't been able to run a fever the past couple years. Even when I had pneumonia last year, despite being desperately ill and everyone else who had the same thing I had running very high temps, the highest I got was 99.

Conversely my BP/vitals can be bad and I actually don't feel terrible at times. But yes, my vitals are frequently fine and I have a boatload of symptoms. That is one of the reasons I found my cardiologist wasn't as helpful as my neurologist. Once my VS stabilized on meds, the cardiologist figured it was all good. Neuro seemed to be more aware of all the other symptoms that go along with POTS and knew that wasn't the case. Makes me wonder if this phenomena isn't where the neuro-immune-endocrine part of this whole thing comes in. Seems like most of the POTS specialists focus on the cardiac and neuro aspects but the immune and endocrine pieces aren't being addressed. Think that's a big part of the picture they might be missing.

Oh yeah. Hyper POTS, according to Dr Grubb, is the most rare type. So you hit the jack pot all around! Why doesn't it happen when you play the lottery, right?

EP cardiologists are frequently the ones who seem to be most conversant with POTS in general, although that's obviously a pretty broad brush I'm painting with there. Freaked- I'm saying that an O2 sat monitor might not be helpful in this particular case because MME is asking about a condition that is related to high CO2 levels. There are monitors in a hospital setting that measure CO2 in the blood but they are very expensive and not readily available like O2 monitors are. Otherwise it's done by drawing arterial blood gases I believe. If you are turning blue MakeMe, it seems to me you don't need to worry about an O2 monitor; you know your O2 is low. I would suggest your husband either be trained in CPR or be calling 911 (or both) -if you are literally turning blue and stopping breathing when you pass out. Even if he has to call and cancel them this isn't something to mess around with. Seems like this has been a relatively rapid onset and a significant change in your condition that definitely needs further checking out. Just my opinion, for what it's worth.

I'm not sure an O2 sat monitor would be helpful as it doesn't measure CO2 levels and that's what you would want to be measuring. Do you have a cardiologist or pulmonologist you have seen or could be referred to?

BP going up with tachycardia is a hallmark symptom for hyperPOTS so it may be that you fall in that sub-category of POTS patients. Welcome to the forum. Sorry you have reason to be here.

Congrats!! So happy to hear you finally got some relief from your chronic pain. You were so miserable and I'm so happy to know you found something that works for you. Yay!

I had noted a connection between headaches/migraines and my gut quite a few years ago. I mentioned it once to a licensed massage therapist who also had knowledge of oriental medicine. I said something about the headache causing the GI problems. His opinion was that it was probably the other way around and that the GI problems caused the HA. I haven't ever had a "western" medicine doc really acknowledge the two being linked other than to say that it's common to have nausea etc along with a migraine. They wouldn't ever acknowledge any causative correlation however. But I know there were times when HAs improved after things finally moved down below. You might find more answers in this arena looking at complementary medicine ideas or seeing someone with a more "integrative medicine" approach vs a standard GI or neurologist.

Really glad you're getting some positive results, both with the testing and with some of the treatments you're trying. Hope it continues! Please keep us posted. It's great to hear what all you're learning. Thanks for sharing.

Hi and Welcome! Sorry you have reason to be here but glad you have a diagnosis finally. Always nice when you get something solid and get to move out of the "it's all in your head" category. Don't know if you've had a chance to check out the DINET website but it has a lot of info about all the various types of dysautonomias/POTS/NCS etc and how they can be diagnosed. If you look under information/resources and click on the POTS place link you can find a lot of info there. There are a few places that have specialized autonomic centers that can do testing to help identify subtypes such as low blood volume but not all places can do all the various testing available. Usually you have to be willing to travel unless you happen to live near one of these facilities (Mayo, Vanderbilt, Cleveland Clinic, Dr Grubb in Toledo, Alabama, Stanford, Washington, Virginia, NY, etc) Personally I was seen at Cleveland Clinic by cardiology originally and had testing including TTT, autonomic reflex screening including QSART, heart tests, catecholamines, blood volume and red cell mass done. Later I was seen at Mayo by a Neurologist for some of the same testing and then some others that were specific to neurology. That said, it didn't change too much what my local cardio was doing as far as meds for treatment. However it did help a lot with getting respect from my local docs by having a diagnosis from those other places. It also helped when I had to file for disability and it helped my peace of mind to have documented deficits. Hope you can find some answers and support here. Best Wishes!

Amy- Since your symptoms came on after "a massive viral load' have you ever looked into ME/CFS as a possibility? There is more and more research indicating that there appears to be a "hit and run" type of event that occurs in a lot of us where there is a combination of a viral attack along with a genetic predisposition and probably some type of environmental factor which sets up a 'perfect storm' type situation for an autoimmune reaction that is self- perpetuating in this condition. Even if it's not ME/CFS, it may be some other type of NeuroEndocrineImmune disease. Here is a link to the 2011 International Consensus Statement on ME http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/full Here is a link to a Primer for Medical Practitioners for testing and treating ME http://www.iacfsme.org/portals/0/pdf/primerfinal3.pdf There is a lot of exciting research in the ME/CFS area going on right now so hopefully there will be some answers coming out in the next few years. While I was diagnosed with POTS/NMH first (4 years ago, although I've had it for 7), my POTS doc currently acknowledges that he doesn't know what kind of POTS I have because it's not really fitting into any of the traditional categories. I've definitely noticed my symptoms have changed over the past many years and my BPs have been running much lower this last year in particular. Not as severely as yours however. Sorry to hear that you're having such problems. Must be massively frustrating. I started seeing an immunologist who specializes in ME/CFS last year to work on the immune aspect of the disease as my POTS doc wasn't addressing those things for me. It seems to have been helpful in many regards although certainly not a cure yet. Might be another area to explore if you haven't already. Best wishes!

I was at a continuing ed conference on Mito disease last fall. The doc who was speaking was one of the top specialists in the country. His opinion seemed to be that they still are a long way from truly understanding mito disease but that it may be involved in a lot of the chronic illnesses that we see today. There are a few specific types of mitochondrial disorders they can test for using muscle biopsies but it's very expensive and requires surgery. Also, if you don't test positive for one of the types they test for, it doesn't mean you don't have mito disease, it just means you don't have one of the types they know how to test for yet. Currently the only treatment seems to be high levels of supplements for the most part. Creatine is one of the ones this doc suggested. If it's working for you, that's great. Hope it continues to help!

My POTS specialist has a cocktail he uses for Mast Cell issues that includes an H1 blocker (like Allegra, Zyrtec or Claritin), and H2 blocker (like Pepcid), Gastrocrom and Aspirin. My allergist has added in Singulair in my case as well. Sometimes I have to use a couple different H1 blockers in a day or add in some Benadryl.

I know my POTS specialist originally said he thought I had neuropathic POTS with a hyperadrenergic component. He says a true hyperPOTS patient wouldn't have the low BPs I have and yet I have a lot of the other symptoms of a hyperPOTS patient, including the increased catecholamines. Over the years I've been seeing him, he's gone back and forth on what type(s) I have and now he just throws up his hands and says he doesn't know what kind of POTS it is. I think this is where some of the terminology can be less than clear and different docs mean different things when they use the same terms. Also, some patients do seem to have symptoms that cross over the boundaries of the various types. Until they can clearly define the sub-types by labs or some other objective measurements, this confusion is likely to continue.

The conventional wisdom has been that younger people and those with a post-viral onset will tend to improve over time. I'm not sure about pregnancy onset as I haven't heard any statistics on that. Remember that people who have recovered are not hanging around on these forums...they're out living their lives so it's unlikely you'll see them on here. Those of us who are still hanging on here are the ones who haven't recovered over time or who are still relatively new to the diagnosis. The other thing is that even people who have said they were POTS free or recovered have sometimes come back several years later to say that they have had a relapse. On the other hand, there are a lot of folks who are now living full lives and while maybe not POTS free, are able to manage their symptoms to the point that they no longer consider POTS a major issue. The founder of this website is one such person. She moved on a few years ago as she had so many other great things happening in her life that she no longer had time to maintain this DINET site. So yes, there are a fair number of people who have recovered to the point that they aren't bothered by symptoms much, if at all, on a regular basis.

Hi and Welcome- Regarding the "inner vibration" or restlessness you describe....I remember having that in the past. Not so much recently thankfully. I wonder if it's related to the extra norepinephrine/epinephrine that the body is producing when you are upright to help compensate for whatever it is that is causing your POTS in the first place. Even though the HR subsides, it can take awhile for that stuff to work thru the system I think. I have discussed with my POTS neuro that it feels like my sympathetic/parasympathetic nervous system(s) don't play nicely together anymore. They don't seem to have a smooth mechanism for transitioning between the two or for balancing the two. It seems like it's either all one or the other. His response was "that is pretty much the definition of dysautonomia". So it may be that the inner vibration/restlessness is the nervous system trying to find a balance point after being "stressed" by being upright. As far as the vertigo, I sometimes have the feeling that my brain is moving inside my skull and my eyeballs aren't quite lining up with my eye sockets quite right. Not sure if this is what you are describing but kind of sounds somewhat similar.

Glad you survived all your testing at CC. The QSART is to measure your sweat reflex which is a way to measure autonomic nerve function. I didn't do the 10 minute TTT at CC because I'd had such a bad reaction in the cardio version earlier in the day. I know at Mayo though when they do the 10 minute neuro version they measure beat to beat BP/HR changes as they tilt you. Maybe CC does the same. They are able to see specific types of changes that correlate with various issues according to my neurologist. Sure hope you get some answers after going thru all the testing. Hopefully they'll have some helpful recommendations for you.

I was told at one of the major clinics that at least 50% of POTS patients have normal autonomic reflex screenings including normal QSART. That doesn't mean you don't have POTS though. Like others have said, the diagnosis of POTS relies on the HR increase along with clinical symptoms the patient reports. If your docs (including one who specializes in POTS) feels you have POTS, you probably have POTS.

Hi Michelle, I remember you and Kayleigh too. So glad to hear that your daughter is doing so well now. She had a rough time of it back then. Sorry to hear your husband isn't doing so well. I am not sure what the difference is but I'm guessing that a TTT- EP study might be the cardiac version of a TTT rather than the TTT that they do in the neuro department with the autonomic reflex screen. When I've had the cardiac version of TTTs they ran 45 minutes long rather than the 10 minute ones they did in neuro along with the ARS testing. I think young women are most prone to getting this but it can strike anyone. Good luck getting your husband's situation under control. Sending you gentle hugs. You've certainly been through a lot!

Usually if they are testing your catecholamines (epinephrine/norepinephrine/dopamine), they will do a blood test while you're lying down (after you've been in a quiet, dark room for 30 minutes) and then do another blood draw after you've stood up for 10 minutes. They usually compare the two numbers to determine if a person has hyperPOTS etc. If they took blood after you were on a TTT and fainted, I'm not sure what they were looking for at that point. Hopefully someone else will chime in who had a similar experience.

Hope you can get some answers from your neuro appt. When I did cardiac rehab for my POTS they had me doing weights as well. I found that I was able to do fewer reps with less weight at the end of the program than I had been able to do when I started. It made no sense to me from a physiological point of view and none of the trainers in the program could explain it either. Since then I've read some studies that seem to explain some of this phenomena but it sounds like you need a thorough evaluation by a neurologist at this point before you start looking for obscure studies to explain it. Good luck!

I agree with Sue. Sounds like it could very well be hypoglycemia and a physiological "panic" reaction occurring as a consequence. Do you see a neurologist for your POTS though? Sounds like you might also want to run this by him/her as well if you do. The fact that this is happening repeatedly and is a big change from your norm seems worth checking it out with your doctor. Don't get me started on ERs. If they didn't have UTIs and dehydration to fall back on as diagnoses.... Ugh!!

Hi and welcome. Sorry you are having such a difficult time with this pregnancy. I didn't have POTS when I had my pregnancies but I did have very complicated pregnancies and spent a lot of time on bedrest. Be aware that even without POTS, after being in bed for a long time you can have POTS type symptoms (tachycardia, palpitations, lightheaded, sweating, etc) when you start trying to be up again. Having POTS on top of that may make it really interesting trying to get back on your feet. You might consider asking your doctor for some home care Physical Therapy to start on some exercises in bed while you are still pregnant to help maintain some strength and muscle tone in your legs at least so that when you're ready to be up more you have some muscles left there to assist the skeletal muscle pump. There are some PTs who specialize in Women's Health so trying to find one of these would be best if you can find one. They would be most knowledgeable about what safe exercises you could do while pregnant and on bedrest. They could also help you with some gentle breathing and stretching exercises that might be beneficial to you as well. Once you have the baby, try to be patient with yourself as it will likely take time to get back on your feet. The combo of POTS plus deconditioning from bedrest is going to be a challenge so be kind to yourself and know that this might not be just like your other pregnancies where you could bounce back as soon as you had the baby. When you say your heart can hardly handle any physical activity is that because of the tachycardia or what do you mean by that? I'm curious how your doctors diagnosed you with POTS? Did they do a poorman's TTT? Have they ruled out other cardiac problems? Best wishes!

Thinking of you and your daughter. Hope she is getting the help she needs.