kluesyk

I strongly feel that there is a component of autoimmunity and possibly a bacterial cause of my POTS, shortness of breath and muscle weakness. I know from past experience if I receive a steriod shot (kenalog/celstone) that I have a DRAMATIC improvement of my symptoms for about 2 1/2 weeks. It is much more than "Oh the steriod shots made you feel better" it is the fix for the problem. Unfortunately one cannot live on steriod shots because of the side effects.....in my case after two steriod shots I broke out with Shingles last summer. I also tested positive for a chronic mycoplasm pnuemonia infection last summer and have been on low dose Azithromycin which has all but eliminated my shortness of breath and coughing. My plasma Co2 levels also went down...they were too high before. I had to ask the doctor to test for this because I noticed a big improvement when given a 5-day dose of Azithromycin for an uppper respiratory infection I had. Just wondered if anyone else had similair experiences and what are you doing? Did you find a steriod that helped that would not cause such side effects? I do also have adrenal insufficiency and Hashimoto's thyroiditis which compounds the problem. I for some strange reason require twice the normal replacement dose of cortisol just to keep me out of the hospital with adrenal crisis. Anyone know of any research that is going on about this?

Yes, I take a small amount of Lyrica (25mg). It does help with the leg pain I have. Only problem was dizziness, which is why I dropped down to 25mg. I take it before bed and do ok now during the day with no dizziness.

I saw a nephrologist recently and found I have a problems with wasting magnesium from my kidneys and my GFR is in the 50's. I already take 700mg magnesium and soak in a magnesium bath(epsom salts) every night and still tested really bad on the amount of magnesium I was wasting. He told me it would bring down my potassium and sodium too if magnesium was out of balance which will make the POTS worse. My serum magnesium is usually at the bottom of normal and my RBC magnesium is low 3.2 when the low normal is 4.0. Might explain some problems if my magnesium is off. I was impressed by how MUCH this nephrologist knew about POTS. He actually put me on Clonidine which so far is the only drug I have been able to tolerate that helps at all. He wants me to take Zoloft, but I am still thinking about that....don't like antideprresants. So yes, in my case it was worth seein the nephrologist.

I have hyperadrenergic pots and a small amount of clonidine seems to help me. I also drink 2 cups of coffee a day ( I have blood pooling in my lower abdomen and legs which the coffee seems to help with). I drink gatorade and add celtic sea salt to my diet also. I eat 6 small meals a day, large meals really set off my problems and I try to avoid white carbs, sugar and eat more protein and veggies. Compression hose helps me stay upright longer without the hyperadrenergic response getting set off. When it does happen,(tachycardia, high blood pressure, shaking, nausea, flushing and that "I am going to pass out if I don't sit down soon feeling", I can take 1/2 of a xanax and it will help a lot. I also use Zofran for nausea, and Relpax for migraines. And last which is very strange is ICE. I can eat ice and put ice packs on me when I have an episode and it helps tremedously. Hope this helps, although everyone seems to be different in what meds can help them. I tried so many before and they did not help or made me worse.

Yes, I also have addison's as well as hashimoto's and hyperadrenergic POTS. Replacing the cortisol helped some but did not fix my health problems. Sometimes I think the endocrine and autonomic systems are like spiderwebs, when one thread is broken it affects the whole web. It is just hard to figure out how to repair and fix the system, especially when so many areas are affected.

Basically they did exactly the same for me as they did for firewatcher at Vanderbilt. I wish they would have done more tests to discover the cause. Maybe if you do the clinical trials it would be different. The Hyperadrenergic diagnosis was based on my resposes to the ANS testing, flushing, and my past symtoms. I recently(in other testing at home) have an elevated Chromogranin A test which is a marker for NET or carcinoid, so I am seriously thinking of trying to get more testing to determine the cause of my flushing and tachycardia. I think the diagnoisis of POTS is important, but more important is the CAUSE. Until then all we are offered are bandaids and like me so many are VERY sensitive to medication and most meds will not help.

I only saw one autonomic specialist at Vanderbilt in March. They did the autonomic testing in the am and saw him later that day. He looked at all my records and results of autonomic testing and gave me a letter stating my diagnosis and proposed treatment plan. I had to take it back to my cardiologist for treatment. I have been able to ask a few follow up questions via email so that has been helpful, but from what I understand it is diagnosis there only and you followup with local drs. It has been helpful to have the paper with the diagnosis, but I am still struggling to find a dr to help with this condition here locally. I have went through several of the proposed meds that have not helped or I cannot tolerate. (Methyl-dopa,Propranolol, Lexapro all I could not tolerate) My cardiologist is kinda just telling me to live with it. Had a neurologist try mestinon(which helped, but gave me bad asthma), and a nephrologist give me clonidine(sm amount) which has been the only drug that I can tolerate that helps. Also increasing my salt and water and wearing compression hose ankle to waist has helped.(Vanderbilt reccommended these). I think we are all so different in the causes of the POTS that it is difficult to find the combination of meds that help. Each one is unique I think. So Yes, it was worth going. I stayed at the Hampton Inn which is really close to the Autonomic Center. It took about 3 months to get an appointment. My cardiologist emailed the dr so maybe that is why it was quicker. Good Luck and hope you feel better soon!

Sometimes it helps me to eat ice or put an ice pack on the back of my neck when I get really bad. Don't know why it helps, but it does. After trying Methyl-dopa, Propranolol and Midodrine and not being able to tolerate them, I AM doing some better on a small amount of Clonidine. It just takes time to find the right medicine, but it sure is frustrating in the meantime. My cardiologist wanted to put me on Ivabradine too, but told me he thought it was unavailable in the US. Do you live in the US? Can you now get it here in the USA? I know Europe has it now. Hope you feel better soon!

thanks for all the information! I will look into getting the book you mentioned. My neurologist is trying to get me into Mayo at Rochester. Are there any doctors there that know about carcinoid? Dr Woltering sounds really good. The recommendation of my endo was to just wait for 2 months and retest the Chromagranin A test if high then do more evaulation, but I have been sick so long....I wish they would go ahead and try to find out if this is one of the causes of the flushing, muscle pain and weakness, shortness of breath and left side kidney area pain I have. Just need a really smart doctor......

Thanks Godsgal for your reply! I have had the 24hr methylhistamine done and it was ok. Never had the trptase done. I have had at one time a high histamine in my urine. I know that I read that epinepherine helps those with mast cell disorders, but it really makes me sick with severe chest pain, tachy and shortness of breath, so I wonder if it is a carcinoid or pheo that they didn't see on the scans. I am so tired of doctors and tests.

I also have adrenal insufficiency(Addison's) and Hyperadrenergic Pots and my potassium has always been low. Even before ever taking replacement cortisol(before I knew I had addison's)my potassium was low in the ER following passing out after going up one flight of stairs on 2005. (I also have crushing chest pain, high heart rate and weakness when low on potassium) Even tho I supplement with 30meq slow release potassium, I still test in the low to low normal range for potassium. Last cardiologist told me he suspects I might have something called periodic potassium paralysis, where my potassium dips low and then goes back up. I eat bananas and drink gatorade all day. It is so hard, it is as if all our regulators are broke.... Hope you feel better soon!

Well Thryoid fine needle biopsy on increasing size nodule says benign, but my Chromogranin A test is elevated at 268 range<225. It took 10 days and a call to the hospital where I had it done to get the endo to respond..... He just suggests I get it retested in a few months with my local doctors, he doesn't want to follow up with me. (He was a real winner of a dr!) I know that is a marker for carcinoid or pheos, but my urine tests for pheos have been ok. Two years ago my 5 HIAA urine test was slightly elevated and I did the whole octreotide scan which did not find any tumors. Five months ago the 5HIAA test was ok. Is the Chromogranin A test ever an indicator for mast cell problems? I have had chronic swellings for 20 years, but I have a REALLY bad reaction to epinepherine in any form. Severe chest pain and tachycardia....so that kinda leans more toward the carcinoid.... I have a lot of flushing, tachycardia, terrible muscle pain and weakness, chest pain, shortness of breath and when upright bad left side pain near my left kidney/adrenal area as well as the POTS symtoms. My neurologist is trying to get me an appointment at Mayo in Rochester. She sent my info 2 weeks ago, but I haven't heard a thing. Does it take a long time to hear back from them? Anyone know anything about this test and what it means???? Thanks for helping!

I tried to get in to see a dermatologist when I had three strange skin patches on my chest, but could not see him until they had faded. (Too long of a wait for an appointment) He wouldn't do a biopsy, said to wait to see if they came back. They are still faintly there. My patches looked like a bruise at first(brownish) then went to a reddish vascular looking patch(not raised and didn't itch a whole lot). My breast doctor told me to see a dermatologist, but I got a steriod shot for an URI and they started to fade. I had them for 3 months. What other definitive test can determine mast cell disorder? I know at one time the histamine was high in my urine test. I already take zyrtec and benadryl(I have for years) and most of my swellings are controlled.

They did give me a type of tracer injection....I think is was radioactive. I don't do well with contrast dye (hives) but did ok with this. It took returning three days to the hospital for scanning. They want to watch the elimination of the tracer to see if any tumors light up. It was hard to lie there for 40 and more minutes at a time. Hope your 5hIAA levels are ok and you don't need the scan.

sorry....meant 11 thousand.....not enough blood to my head today!

Yep, had elevated 5HIAA? so did the whole three day octreotide scan....did not find any tumors. That was 2 1/2 years ago when the flushing and shortness of breath was starting to get bad. Don't think they told me to abstain from eating bananas, so maybe that is why it was high. The octreotide scan test is VERY expensive like $11,000.000. My most recent 5HIAA test was normal. Been checked for tumors on the adrenals, ect, and nothing shows up, just have elevated adrenaline, histamine, & flushing. Currently waiting on biopsy results from nodule on my right thyroid that is increasing in size and causing me to get very hoarse. Had the biopsy 8 days ago, and last I called the dr office it is in his inbox waiting for him to look at it.....while I sit here wondering if I have cancer and have to have surgery. If it is bad might explain the flushing and problems I am having. I hate waiting.

I have found all but one endo to be very narrow minded, do not listen to their patients, and really only good at treating diabetes. The one that was good.... died one year after I started seeing him. (I also have addison's and Hashimoto's along with POTS) A functional medicine doctor has been the best for me. He is a MD He will prescribe the natural thyroid(Most endo's go crazy and want you to change back to synthroid). I did terrible on synthroid for a year....fatigue, hair fell out, constipation, all continuing symntoms of low thyroid) Did better on Nature throid. Why would I want to return to a medication that made me so sick? The last endo I saw had no interest in helping with the POTS. It was a terrible appointment. The neprologist I saw recently knew more about POTS than all the doctors I have seen with the exception of the doctor at Vanderbilt.

I too have fluctuating GFR numbers form 70 too 50 when ill. My creatinine also goes up when GFR goes down. as well as my urine PH goes high(8), I am seeing a nephrologist that is trying to figure out why I can't keep my potassium and magnesium. Even though I take supplements, they are low. Urine spot test was low in potassium, too, so I don't know where it is going..... The fact that my renin is low, when I have POTS(poss low blood volume), & aldosterone is low does seem to indicate the kidney as part of the problem. I also have bad left side kidney pain when upright very long....which usually triggers increased urination. I suggested the nephrologist rule out a left renal vein compression, but am still waiting on a call back....having a hard time finding someone in my small town that knows how to scan(ultrasound) for this. I need to be standing up, sitting and lying down to accurately show if I have compression.

I had carbocaine last time I had a tooth filled and did ok. They also used lidocaine for numbing for my thyroid biopsy and did ok. I cannot have ANY epinepherine or I get severe chest pain and tachycardia. Good luck!

I totally understand. Had a bad time myself last night. I know it is kinda strange, but I sometimes eat crushed ice and put a heating pad on my chest or alterate eating ice with drinking hot water and it seems to calm my crazy body down. I guess I shock it back into rythmn. Doesn't always work, but does most of the time. Sometimes Zofran will take away the nausea and helps calm my flopping, tachy heart down. I know vasodilation is a problem with me, so the ice helps. I have figured out that I will have a VERY bad evening if I eat a large meal, causes bad symptoms. Hope you feel better soon!

Saw a new dr(nephrologist) who wants to put me on Clonidine and sm amount of Lexapro. What have others found to be a successful antideppresant for POTS? I have the hyperadrenergic type. The dr said it is not for depression, but it sometimes helps to reset the autonomic nervous system. He is also going to do an ultrasound of my left renal vein as I have bad left kidney area pain when I am upright and increased urination. He is also trying to figure out why I cannot hold onto potassium and magnesium even tho I supplement a lot. I was suprised how much he knew about POTS. It was rather nice for once to not have a doctor give me the glazed look and hurry out of the office. What is the opinion and experience of others with taking antidepresants? I am SO sensitive to meds, I am apprehensive. Need to know more. So far I have not tolerated Forinef(caused migraines, Methly-dopa(totally could not function, physically or mentally), Mestinon(helped, but caused severe asthma),propranol(heart rate too low), Midodrine caused bad nausea(and because I have Addison's, too I cannot vomit, or I end up in the hospital hooked up to IV's. All these I have tried in small doses and still not worked. I am starting the Clonidine today, the pharmacy is waiting on my insurance to approve the Lexapro. I am just not a big fan of antidepresants. Any opinions?

When I was diagnosed with Adrenal Insufficiency 3 years ago, my ACTH stim test started very low 3.9 and stimmed to 6.1 in 60min. I believe anything below 10 was abnormal. I know they want you to double in a hour, but it is very strange that you dropped after the 30min increase. I know they told me if I stimmed to 20 that would be great, so maybe they are looking at the fact that you started at a decent level. The stim test made be feel very bad. Chest pain, left side adrenal/kidney area pain, felt like I had been punched in the stomach, nausea and shaking, so I knew something was not right. The nurse before the test told me it would make me feel great...... 3years after the Addison's diagnosis,now I have POTS. Don't know if it is related.

I have in the past had problems flying with severe chest pain, dizziness and shortness of breath which happens during the accent and decent of the plane. In the past, I know this sounds strange, but eating ice and then alternating drinking hot tea helps me some. Maybe it shocks my ANS into a better place. The last time I flew, I requested wheelchair assistance from the airline and they met me at the ticket counter. I did not walk or lift my luggage and did not have ANY problems with the flight. (NO chestpain, shortness of breath, ect.) I think the prior walking(we all know how airports are) and lifting puts me into a bad state prior to the flight and makes the probablity of symtoms during the flight much higher. I also had a wheelchair waiting as I stepped off the plane and they took me to the connecting flight. On the way home, had to walk and pull my carry on quite a way before getting to the ticket counter(San Diego airport)where I got a wheelchair, and I DID have chest pain on that flight, so it is directly related to the walking and lifting prior to flight for me. I do much better being in the first 5 rows. I know I will be off the plane first and I don't see all those people behind me.

I have a bad reaction to having blood drawn also. If it is more than 4 tubes of blood, I will have problems. I can feel bad for several days afterwards. Just try to drink more gatorade, water and salt. The last time they had me lay down on a table and I did better. Not so much immediate problems. I wonder if our displacement of blood is so bad that taking even a small amount of blood out sets off the body's alarms that we do not have enough blood and creates the awful symtoms we get.

Thanks everyone for your replies. I got my neurologist to perscribe a small amount of Midodrine. Waiting on pharmacy to get it in. Hope it helps. Getting discouraged....I am such a fix it person, and this is one I can't fix. Thanks again for taking the time to offer suggestions.