kayjay

Thanks - I guess I should have mentioned that I have reynaulds-

Anyone take calcium channel blockers? I've been prescribed one and wondering if any other POTSYs have taken them?

I'd appreciate any feedback. I'm also on a beta blocker-

Are you sure? I'm not questioning you- but wondering if you may have misunderstood? I recently spoke with someone over 50 that is going this winter. The " clinic" I went though did all of the testing. The have some sort of pots rehab for young people- parents and children have posted about it here.

Like everyone else- Ive had good and bad. The only thing I will say is that the 2 times I was put in danger with medications changes they were prescribed by NPs.

They aren't doctors or they would be doctors if that makes sense.

With that said I don't bother to see a doctor when I go to the gynecologist. I see the np- shorter wait list.

I also had an RX issue with a NP I took my daughter to.

I personally think the smell sensitivity you describe is genetic. My mother, son, and I are "super smellers".

I can smell like a blood hound. It's a curse:(... On the upside I won a game once where you had to name different kinds of candy melted- I got every one correct using only my sense of smell and even got the brand name for each one.

Of course I won a candle that smelled terrible... I regifted!

IMO reacting to scent or light negatively is another issue entirely. I have had trouble during "flares" with lights, sounds, and smells.

Regarding smells and your family, I've come to realize that most people think they can smell well because they CAN smell. We don't take smelling tests like we do for vision and hearing. My husband knows that my sense of smell is ridiculous. I can sometimes smell where he has been or where he had lunch.

Last time we were on an airplane together- he looked at me and said "I am so sorry". Airplanes smell disgusting and filthy anyway- but the man in the seat behind us had horrible halitosis. At that moment he realized it's not fun to be me sometimes.

Reacting to lights and chemical fumes is a separate issue for me and I believe it may be because of dysautonomia.

I use a manual cuff as well. Got tired of getting error code after error code because my pulse pressures were too low and the machine wouldn't accept it so went back to a manual cuff about 3 years ago.

Recently however even the manual cuff is starting to make me wonder if I'm really as weird as it says. LOL My left and right arm are sometimes exactly the same (or very close) as they should be but sometimes are wildly different. For example, right arm was 128/90 and left was 100/80. At the time my left hand was cold and numb feeling and right was warm so maybe that accounts for the difference. Too weird though!

I don't know why but this difference occurs for me as well. I once was in a local hospital that wanted to get out of. They wouldn't release me because of my blood pressure- I asked them to take my Bp in my left arm- I got released.

The good thing about the manual numbers is that doctors believe you. I recently have had bradycardia during the day (heart rate of 40 upright). My blood pressure was very high- I ended up in the hospital but when I called to ask what to do- one doctor told me that it was the machine. It actually wasn't but digitals seem to be error prone.

Makes me think of those ear thermometers I had when my kids were babies. They were sometimes right but the old-fashioned glass kind was reliable.

I've actually found the most accurate way is also one of the least expensive: I use a manual cuff with a stethoscope to listen for the bp myself. It's very easy.

I need to do this. I have omron and it gives me a general idea- but often is inaccurate. I spike high blood pressures and have used my digital to make medication decisions and "should I go to the hospital?" decisions. With a digital I tend to not "believe" the readings until I've had several high readings in a row.

My son does not have pots but has blood pressure issues. His pediatric nephrologist suggested that I learn to take his manually. He emphasized that even the best digital monitors are not as accurate as the "real deal". Not getting a reading is scary- as are very high readings.

I'm thinking of "you tubing" how to do it manually.

Sarah knows a lot about migraines (I'm sorry to say).

I take nadolol, eat gluten free, and take kariva (generic mircette) continually. I no longer take migraine meds. My migraines are very infrequent now. I also don't have auras- although it used to sound like my ears were muffles and I'd have lighting zigzags in my vision or lose my sight temporarily.

I'm so sorry that you deal with migraines. They are horrible and draining. Many times I found myself explaining to my children " I am irritable... It's not you". Even happy noise can be too much!

I know most of us hate the idea of more medication... But can you possibly take a sleep aid and the migraine medication? It's not for migraines but I have been taking provigil for about 6 months. I take Ambien at night.

It's not ideal to take multiple medications but pain/no sleep is a vicious circle.

I hope that you find something that helps- or that they just stop.

I am getting everything organized to do Gluten free. It is a chore, but so is everything else I do I understand that they think there might be other genes that they don't know about so I don't think testing in inclusive.

Did you notice a difference when going gluten free? Did you find the process hard?

It took me months to notice a difference but I will never to back to eating gluten. In the past 3 years I've eaten the cheese off a dominos pizza, one beer, and icing off cake which I know had crumbs in it. No other gluten "cheats". I'm 100% convinced that gluten is bad for me

It is hard at first- it gets better. My husband eats tons of gluten but it usually has no appeal to me.

I can't say enough to encourage you to try gluten free. If I can do it I think anyone can. I've never really been on a weight-loss diet and I wasn't sure that I could be gluten free.

French bread and brie used to be my favorite meal. The idea of wheat bread is actually a bit repulsive to me now.

I had a genetic test and everything thing else (i think? ) except a biopsy.

The genetic test was not covered by insurance. Gluten free might be the best thing I've done for my health.

One more thought- you can have Orthostatic Intolerance without POTS. Mayo clinic diagnosed me with POTS and OI. You can have one or other or both.

Also for those of us who have had saline for tilts- it eliminated the possibility that my symptoms were due to dehydration. I supposed some healthy people could fail a tilt table by dehydrating themselves.

I also don't know how common it is to be given nitroglycerin during a tilt. Perhaps someone else has some information.

I did not have nitroglycerin during my tilt- I had saline for my first tilt. My hr increase was almost 100 bpm.

I wasn't allowed to eat the morning of my test but I was allowed to drink water. I had a clear and robust response to the tilt.

My second and third tilts were only 10 min. I did not fast for those and I did not have saline.

I'm tall and excessively hyper . I've never been overweight but I became very thin before diagnosis. I just couldn't keep weight on.

As for the sleep issue, I take Ambien CR. I don't know if I'd sleep without it. I still don't sleep well but it beats waking up every few hours soaked in sweat.

Also for what it's worth I have hypo and hypertension.

It's probably more unusual to have hyper pots and not have episodic high pressures just because of the effects of adrenalin on the body.

It is certainly a push- but it's a good place to have troubles. Is someone able to go with you? Do you know which neurologist you are scheduled with?

Seriously - they are experts.

I cannot say enough good things about their pots clinic. You will not need to ask for tests. I would definitely go with a notebook - I have a list of questions each time and also take notes on everything the doctors say. One of the best things about mayo is that you will be able to access everything online when you get home. I can pull up all of my labs and notes at any time.

If you have had ct scans and such you may want to send a copy a head of time. I didn't want to have any more testing than needed.

I'm not sure where you have been previously. I was a Johns Hopkins patient and spent a week at NIH in addition to my local area hospitals. Mayo clinic is on an entirely different level. Mayo clinic was very respectful and humble.

Additionally they take a approach. You aren't just seeing one type of doctor. I left with a comprehensive plan. It included exercise instruction, dietary advice, lifestyle tips and medications.

I was repeatedly impressed. I'm not cured, but Im far more functional than I was.

Best wishes to you.

There's some confusion for me whether Dr. Grubb recommends higher sodium intake for his hyper patients? Of out curiosity can you guys help?

Sarah- I'm not a patient of Dr. Grubbs but I've gotten myself into some trouble with his suggestions for h-pots. I'm not sure how much Mayo agrees with him on a case-by case basis. He certainly has helped many people on this forum.

Mayo certainly sees more pots and hyper pots people so just biased on sheer numbers, they have a lager pool of research and statistics. Also I saw a team at mayo - neruology mainly but also - cardiac team.

I'm not suggesting that Dr. Grubb is wrong and again I've never even seen him. I've gotten myself in trouble by letting my salt get too low, and by taking Wellbutrin. Cymbalta didn't harm or help but I at least had the sense to run that by mayo doctors before I started.

His published material that I have read seem to consist mostly of case studies. I personally have to be careful will applying what helped someone else to me.

At this point I check any medication changes I may want to make with Dr. Fealey.(mayo)

I do agree the salt thing is a bit weird. Most of us hypers do not experience high blood pressure from increasing salt. I simply do not develop endema. I've found that top doctors (cardios, nephrologists, and neurologist) would only suggest limiting salt in patients that are retaining too much fluid. I had a long conversation recently with a nephrologist on this very topic. High salt diet does not = high blood pressure.

I use ankle weights in the pool. -anything that can increase your leg strength is a good idea. I use a stationary bike as well.

I was a very physically fit person when I developed dysautonmia. I'm a propionate of any sort of exercise that helps. Ankle weights are a subtle way to add a "workout" to your daily life. I struggle with finding that balance of exercise that helps- in out overdoing things.

My dad once told me that the best piece of exercise equipment is the one you will use. If you will use them- they certainly can help you build strength.

I've been on both Ativan and klonopin. They were not prescribed for my CFS or hyper pots. I was diagnosed at Mayo Clinic in Rochester mn by in the pots clinic. My main neurologist there is Dr. Fealey.

Originally I was given in Ativan pre diagnosis when I was admitted to a local hospital. It did very little to lower my heart rate or blood pressure, however I was able to sleep.

A month or so later my EP changed my script to Klonopin. It seemed to help with fear and I did sleep better with my nighttime dose.

I was on klonopin for somewhere between 2-3 years. At some point it did not help me sleep any longer. Dr. Fealey also told me that it wasn't recommended to pots patients that it could increases dizzyness and orthostacic intolerance. I decided on my own to stop taking klonopin and thankfully had no issues with doing so.

Initially I truely thought klonopin was the best "treatment". In retrospect it worsened my brain fog as well as my short term memory. It also can slow reaction times which can be an issue.

For me Klonopin didn't "fix" anything and did give me additional problems. At the time I thought it helped me, but now I realize long term I'm better off without benzos.

I'm taking provigil. I also have a diagnosis of Chronic fatigue syndrome.

In addition to everything Alex mentioned don't forget to consider iron deficiency. I developed anemia and had a vitiamin d deficiency after I was diagnosed with pots. When you are exhausted and don't feel well it can be hard look after your nutrition as well.

I wish I had a quick fix for you.

At this point- for me- the cause is not important. I'm interested in managing symptoms. It is interesting that some members have not been diagnosed with dysautonomia/pots.

It has been mentioned before, but many other conditions present with the same symptoms. I am comfortable with my pots diagnosis somewhat because extensive testing has ruled out other diagnosis. Drug use, dehydration, adrenal tumors, Multiple Scelrosis, Parkinson's, heart conditions, and kidney problems are just a few conditions that are excluded for a pots diagnosis.

Edit because I'm having connection problems- my point is for me a pots diagnosis was a process. I have a lot of confidence in my diagnosis at this point because of that process.

POTS itself is a syndrome, not a disease. So by definition is cannot technically have a "primary" cause. It is just a collection of symptoms that can be caused by various diseases/disorders. We have the terms "primary" and "secondary" POTS for one reason. We have found that a number of KNOWN diseases can cause POTS (like EDS and CFS) and therefore we call that "secondary" POTS. "Primary" POTS is just caused by some disease or diseases (probably autoimmune in nature) that we don't know much about. It is sort of like how we use the term "idiopathic" when we don't know what the heck the cause is. Idiopathic means "without cause" but really there is a cause, we just don't know it yet. So there ya go.

Yes... This

Forgot to mention - another remedy for Charley horses I read about on a forum for mountain bikers - pickle juice. I posted about this a while back

here is the thread:

http://forums.dinet.org/index.php?/topic/23797-metabolic-disorder-disease/?hl=pickle#entry222430

I was thrilled to read this. I was drinking pickle juice before I was diagnosed. I always thought that it was an odd craving.

Racer- can you go to a different ER. You don't have to take your medical records. Before I was diagnosed I went in to my local er several times.

I actually finally got good help because I went to a great hospital's ER. It actually is over an hour drive but one of the best decisions I've made.

You do have to be careful about when you go in as well. Sometimes it's more crowded and harder to get good help.

Racer- I hope you do find new doctors. What you have experienced is unacceptable in my opinion.