Hyper Pots = Hyper Me!?

[SarahA33]

Hi there everyone,

I’m still reading through a majority of the posts on this forum and am absolutely astonished at the amount of strength and knowledge I’ve already drawn from it. Reading through all of your stories I find myself able to identify (for one of the first times) with almost all of you in one way or another.

One question I would like to ask is if anyone else diagnosed with hyper pots/Autonom. Dysf. has experienced problems sleeping/insomnia. I average about 2-3 hours per night of choppy sleep. (Up for 3 hours, then fall asleep for about a half hour, then back up again for a while.. Just an example of one restless night’s sleep to say the least) I’ve tried everything over the last few years… writing, meditation, yoga, and medications such as Melatonin (big Mistake!), Valerian Root, sedatives like Ambien & also benzodiazapines. I experience absolutely no sedation with the Rx’s, but, my doctor’s did finally realize during a hospital stay, that a high dose B-blocker Inderal, Clonidine, and really high dose of Ativan drops my heart rate about 20-30 points. I take these medications together ( and many more ) 3 times a day for HR control only. It’s been all about trial and error. Anyway.. despite the lack of sleep, I still seem to go 90MPH and rarely feel tired.. The last time I slept hours ( 9 ) was after a round of botox for the migraines. That lasted 3 days. I tend to have a high energy level despite the fact that I should be absolutely exhausted. I experience explosive migraines and a ton of brain fog that the lack of sleep is making so much worse.. I read so often about OI and POTS intertwined with CFS and I seem to be on the opposite end. Just curious to know if anyone else has experienced the same type of concerns. Any advice is greatly appreciated. Thanks! Sarah

[Guest Hanice]

Hi there everyone,

Im still reading through a majority of the posts on this forum and am absolutely astonished at the amount of strength and knowledge Ive already drawn from it. Reading through all of your stories I find myself able to identify (for one of the first times) with almost all of you in one way or another.

One question I would like to ask is if anyone else diagnosed with hyper pots/Autonom. Dysf. has experienced problems sleeping/insomnia. I average about 2-3 hours per night of choppy sleep. (Up for 3 hours, then fall asleep for about a half hour, then back up again for a while.. Just an example of one restless nights sleep to say the least) Ive tried everything over the last few years writing, meditation, yoga, and medications such as Melatonin (big Mistake!), Valerian Root, sedatives like Ambien & also benzodiazapines. I experience absolutely no sedation with the Rxs, but, my doctors did finally realize during a hospital stay, that a high dose B-blocker Inderal, Clonidine, and really high dose of Ativan drops my heart rate about 20-30 points. I take these medications together ( and many more ) 3 times a day for HR control only. Its been all about trial and error. Anyway.. despite the lack of sleep, I still seem to go 90MPH and rarely feel tired.. The last time I slept hours ( 9 ) was after a round of botox for the migraines. That lasted 3 days. I tend to have a high energy level despite the fact that I should be absolutely exhausted. I experience explosive migraines and a ton of brain fog that the lack of sleep is making so much worse.. I read so often about OI and POTS intertwined with CFS and I seem to be on the opposite end. Just curious to know if anyone else has experienced the same type of concerns. Any advice is greatly appreciated. Thanks! Sarah

I am fairly new to DINET aswell. I love these people! I know you will find some answers here! I used to be hyper like that until about a month ago when I drank cacao with nutmeg (never again) now I'm on my couch 24/7 and feeling bad even when sitting down. I suggest being very careful with everything you even eat and drink. We tend to be very sensitive to toxins and chemicals (even the ones in food) good luck and see you around!

[SarahA33]

Hanice,

Sorry to hear about the effects of the cacao w/nutmeg. With the GI issues I have, I tend to not eat all that much throughout the day. I initially started losing a ton of weight because I was afraid to eat something.

Thank you for that suggestion. It just goes to show how sensitive our bodies are.... do you have any idea why that combo has had such negative effects on you?

[Guest Hanice]

Cocoa Side Effects

Eating cocoa is LIKELY SAFE for most people. Cocoa contains caffeine and related chemicals. Eating large amounts might cause caffeine-related side effects such as nervousness, increased urination, sleeplessness, and a fast heartbeat.

Effects

In low doses, nutmeg produces no noticeable physiological or neurological response, but in large doses, raw nutmeg has psychoactive effects. In its freshly ground (from whole nutmegs) form, nutmeg contains myristicin, a monoamine oxidase inhibitor and psychoactive substance. Myristicin poisoning can induce convulsions, palpitations, nausea, eventual dehydration, and generalized body pain.[15] It is also reputed to be a strong deliriant.[16]

Fatal myristicin poisonings in humans are very rare, but two have been reported: one in an 8-year-old child[17] and another in a 55-year-old adult, the latter case attributed to a combination with flunitrazepam.[18]

In case reports raw nutmeg produced anticholinergic-like symptoms, attributed to myristicin and elemicin.[17][19][20]

In case reports intoxications with nutmeg had effects that varied from person to person, but were often reported to be an excited and confused state with headaches, nausea and dizziness, dry mouth, bloodshot eyes and memory disturbances. Nutmeg was also reported to induce hallucinogenic effects, such as visual distortions and paranoid ideation. In the reports nutmeg intoxication took several hours before maximum effect was reached. Effects and after-effects lasted up to several days.

[angelloz]

Ok , I am the person you can relate to! I have not been diagnosed with hyper pots, just autonomic dysfunction. One of my many first and oddest symptoms was never feeling tird even though prior to onset I was a 9 hour a night sleeper. Like you I couldn't figure out why I wasn't absolutely exhausted. Yet energy remained without sleep. At first hyper-thyroid or pheo was suspected but these did not check out. Melatonin was bad for me as well. Anything that works a bit...ativan etc.. caused BP drop and my BP is already too low. I am now 4 years in to this illness and am beginning to sleep a bit better. Maybe my body is finally wearing out, not certain. No answers but I too have read all the discussions on fatigue and wondered why I am the opposite. I have hypovolemia also, diagnosed at the Cleveland Clinic...you would think that would make me tired as well. Sorry no real advice...maybe just sharing will lead to insights.

[kayjay]

I have hyper pots. I'm exhausted! It interferes with sleep in a big way. Years of interrupted sleep makes you very tired.

[angelloz]

Sarah, I forgot one thing that did help. Before bed I had to basically sit for an hour and not MOVE.... not even watch TV....I would have my husband rub my back lightly. I would sometimes be able to sleep for a bit. It seemed the more I moved around the more wound up I became...

[SarahA33]

Cocoa Side Effects

Eating cocoa is LIKELY SAFE for most people. Cocoa contains caffeine and related chemicals. Eating large amounts might cause caffeine-related side effects such as nervousness, increased urination, sleeplessness, and a fast heartbeat.

I will certainly not be enjoying a nice cup of it this winter. Do you happen to know of any resources online that can help finding examples of foods to avoid? I'll try google-ing too!

[Guest Hanice]

What I do is literally look up all the foods I eat, especially spices before I consume them. Basically anything that may exasperate anything cardio or nervous system.I type in Google something like "side effects of cacao" for example and I look at various results.... Some pages don't include ALL the side effects!

[SarahA33]

Ok , I am the person you can relate to! I have not been diagnosed with hyper pots, just autonomic dysfunction. One of my many first and oddest symptoms was never feeling tird even though prior to onset I was a 9 hour a night sleeper. Like you I couldn't figure out why I wasn't absolutely exhausted. Yet energy remained without sleep. At first hyper-thyroid or pheo was suspected but these did not check out. Melatonin was bad for me as well. Anything that works a bit...ativan etc.. caused BP drop and my BP is already too low. I am now 4 years in to this illness and am beginning to sleep a bit better. Maybe my body is finally wearing out, not certain. No answers but I too have read all the discussions on fatigue and wondered why I am the opposite. I have hypovolemia also, diagnosed at the Cleveland Clinic...you would think that would make me tired as well. Sorry no real advice...maybe just sharing will lead to insights.

I think you and I may have travelled down some of the same roads, angelloz. I spent months working with a cancer Institute because all I heard from doctor's was "You have a pheochromocytoma." Due to my labs and symptoms I was experiencing.

A few months later I had to make a difficult choice to leave certain doctor's and put my trust in new ones. It was the right decision, I was diagnosed and on the road to trying to make sense of all of it. Did u happen to have an Octreotide scan there? Just curious. After reading all the info on octreotide .

I become incredibly dehydrated to the point where I was in the ER for fluids. My doctors are in the process of getting the insurance company to agree to weekly at home in-fusions. That would change my life, much like for most of us. I've never underestimated the power of fluids. I take Fludro for this reason, which is tricky with the Hyper POTS since Fludro is known to raise BP's, esp. Supine. I have to be careful and monitor. I cut back on the dosage for a few days and play around with it.

Im glad that you are able to find atleast one thing that is allowing you some peace and sleep. I look forward to sharing more thoughts!

[kayjay]

I also was sent to NIH for a "pheochromacytoma". I go to mayo clinic Rochester now- they didn't misdiagnose me, Johns Hopkins did.

Anywho... I would not sleep without Ambien. I prefer the controlled release. I also take 6mgs of melatonin.

I was on klonopin for a few years and that helped me sleep at first but it got to the point where it didn't work.

[SarahA33]

Hey, Kayjay

Just curious.. who do you see at Mayo? I've had a ton of phone consultations with Dr. Mike Joyner who is absolutely fabulous. His advice about the recumbent bike was great and I also found really helpful his thoughts on daily sodium mg.'s. Are you happy with your doctors treating you now? How often do you head to Mayo?

Also.. now there are three of us just on this post who have described being screen for a pheo! All the literature Ive read and doctors ive talked to said that's a common first misdiagnosis. I'll never forget my former neurologist scratching his head saying, "Your a walking pheo!" lol. Clearly that's not the case, but the clinical features are so much the same. How high do your pressures get?

[kayjay]

Sarah- I see Dr. Fealy. I went in 2009 for 5 days and had a full work up though the pots clinic. I can't say enough good things about Mayo.

I was told by an expert at Hopkins that he was sure that I had a pheo- it was just to small to find. I was a lab rat for dr. Pacak at NIH for a week. I'm pretty sure I've had more radiation than any human should (

I test positive for pheos with the 24 hour urine so I'm guessing that I'm pretty hyper.

I'm not trying to be coy about my blood pressures but I try not to think about it. I get lows and highs. I think I've been 210/ 160 or 170. I seriously try to block it out

Today I was 98/64 and 142/100. Usually I don't take it but I'm feeling a bit breathless. Generally speaking my systolic is 110-140 and my diastolic is 60-90. It bottoms out when I'm sleeping.

Do you mind sharing your numbers?

I 100% recommend mayo rochester. I actually am puzzled when I read negative comments about the place.

[kayjay]

Oops- I never fully answered. I go less than once a year. Three trips so far. They are really good about calling me back with questions. I don't bother them with little stuff though. They also seem to communicate well with my local general internist.

[kayjay]

How about Dr. Svetiana Blitsheyn? She can't be far from you. Williamsville New York? I think she was originally connected to mayo Rochester somehow.

[badhbt]

You can add me to the list. I was diagnosed with hyperpots, but the only difference is that I have low blood pressure. I was ruled out for a Pheo, and was told it was just anxiety.

I use to sleep 8-9 hours without a problem. Now I have to work hard to get sleep just like you. I take ambien 10 mg at night and it gives me about 3-4 hours of solid sleep. Then I wake up ready to go. I will get a few more on and off hours. I too have lots of energy and I never need a nap, I have never been a napper anyway.

I have taken the CR ambien and it gives me another hour of sleep, sometimes. I might try it again, another hour sounds good

[SarahA33]

You can add me to the list. I was diagnosed with hyperpots, but the only difference is that I have low blood pressure. I was ruled out for a Pheo, and was told it was just anxiety.

I use to sleep 8-9 hours without a problem. Now I have to work hard to get sleep just like you. I take ambien 10 mg at night and it gives me about 3-4 hours of solid sleep. Then I wake up ready to go. I will get a few more on and off hours. I too have lots of energy and I never need a nap, I have never been a napper anyway.

I have taken the CR ambien and it gives me another hour of sleep, sometimes. I might try it again, another hour sounds good

Hi! Thanks for sharing your story. Seems all to similar to mine. .Did they ever suspect a carcinoid tumor? How long have you been diagnosed? I also used to sleep around 6-8 hours a night. I never had any problems sleeping until I started having problems with my blood pressure. It's incredibly frustrating. Mainly because I have a ton of energy to do things yet I am unable to accomplish most of them because of the tachy and migraines.. I've found crossing my legs and shaking my feet help with the postural changes when raising from sitting to upright. The salt increase and florinef have been ultimately the most helpful with this. It's an almost impossible balance for me. This is one of my largest obstacles.

Ambien used to work for me when all of this first started happening. It was hit or miss, but I could average maybe 3 nights a week using it and sleeping about 4-6 hours through. Then after about 3 weeks it just stopped working. I tried the LA and didn't have any luck ( Now I know that Long Acting drugs have little to no effect at all on my system. I have much more success with shorter acting meds

And yes.. I completely agree that another hour does sound really good!!!!

[SarahA33]

Sarah- I see Dr. Fealy. I went in 2009 for 5 days and had a full work up though the pots clinic. I can't say enough good things about Mayo.

I was told by an expert at Hopkins that he was sure that I had a pheo- it was just to small to find. I was a lab rat for dr. Pacak at NIH for a week. I'm pretty sure I've had more radiation than any human should (

I test positive for pheos with the 24 hour urine so I'm guessing that I'm pretty hyper.

I'm not trying to be coy about my blood pressures but I try not to think about it. I get lows and highs. I think I've been 210/ 160 or 170. I seriously try to block it out

Today I was 98/64 and 142/100. Usually I don't take it but I'm feeling a bit breathless. Generally speaking my systolic is 110-140 and my diastolic is 60-90. It bottoms out when I'm sleeping.

Do you mind sharing your numbers?

I 100% recommend mayo rochester. I actually am puzzled when I read negative comments about the place.

Hi!

No, I don't mind sharing my numbers I can range systolic 150-180 and my diastoloic ranges incredibly much higher and rarely leaves the 110's-120's. That's the florinef.. they never went that high until I started that. I climb pretty high at times. These numbers don't stick. I typically am on the lower side of the high. It's really stubborn .. My pressures also bottom out when I'm supine at times, though.. I swear it's like a switch I can feel getting flicked off. It's awful. Not often, but sometimes I wonder if my body is trying to reset itself?? Does your heart rate still remain high supine?

Dr. Blytshen is about 15 minutes away from me. She is very good. but ive not seen her I know those who have however.. I take a 15mg daily dose of Midodrine prn.

[kayjay]

I think that Mayo migh be a better choice for you. Vanderbilt is looking for patients that "fit" for their research. Mayo will treat you. It took me 2 1/2 or 3 months to get it the first time so if you are interested you might want to make an appointment.

For me it was very helpful to see an interdisciplinary team.

[Psalm 23]

Hi all. You can add me to the HyperPots list as well. I have been assessed for a pheo twice. My b/p is very labile 80s/50s - 200/110. Until about a year ago I was up every two hours at night but after an increased dose of gabapentin I began sleeping 7 hours. I still battle fatigue though in spite of sleeping for longer unbroken stretches. I guess the quality of the sleep is poor as I have read about with some POTS, CFS and Fibro patients. I would sure like to find a way to increase my energy level. I'm still working on that.

I'm a huge Mayo fan as well.

Janet

[SarahA33]

Hi all. You can add me to the HyperPots list as well. I have been assessed for a pheo twice. My b/p is very labile 80s/50s - 200/110. Until about a year ago I was up every two hours at night but after an increased dose of gabapentin I began sleeping 7 hours. I still battle fatigue though in spite of sleeping for longer unbroken stretches. I guess the quality of the sleep is poor as I have read about with some POTS, CFS and Fibro patients. I would sure like to find a way to increase my energy level. I'm still working on that.

I'm a huge Mayo fan as well.

Janet

Janet,

I often wonder what would be worse... my crazy energy level or feeling exhausted. I think they are both equally as frustrating Have you had any sleep studies? My friend with POTS had a sleep study done and was found to have a very mild case of sleep apnea and was given the machine.. it's helped her a great deal with her energy. She never noticeably snored or stopped breathing previously but was shocked to see the end results.

I'm glad you have found help in Gabapentin.. I was on that years ago but I should talk to my doctor about giving it another shot. Don't think I gave it long enough because back then I was quite impatient. Boy what a completely opposite lesson I've been taught over the last few years!

Also glad that you've had success at Mayo. I haven't decided if Mayo or Vanderbilt is where I'm headed in the future if necessary.. I think I'd end up at Mayo because of their multi-approach. Unfortunately,I am in Buffalo and traveling is a nightmare. Fortunately, thanks to the help of my doctors, this last year I have been taking a few steps forward and am happy. Just wondering who you see at Mayo and if you've found it possible to follow any of the reconditioning exercises. I can do the recumbent bike for a verrrry short period of time but it has helped with a few stairs. (very few!)

Sarah

[Guest maia]

Yup, me too. (though my pots is really a floating kidney) I overslept though. I think my body tries to compensate for poor quality sleep. meditation and acupuncture help. Funny Hanice mentioned the nutmeg, I have some (maybe 4 or 5 passes over a grater) in some warm milk and that helps me to sleep as well as calm an upset stomache. I can see how too much mixed wiht cacao would not be a good thing. the stimulant and sedative mixed might make a body a little confused, lol. Traditoinally a nutmeg nut is simmered in milk then removed-too much is not really a good thing, but small amounts taken in the right way can be. I hope you find something that helps your sleep.

[Psalm 23]

Sarah, you're right an extreme of anything in either direction would be very frustrating. I was assessed for sleep apnea about 21 months ago when I was at Mayo but that test was negative. Thanks for suggesting sleep apnea as a possibility though.

.

The funny thing about the gabapentin was that it was originally prescribed for shingles pain back in 2006. Unfortunately after shingles I was left with episodes of postherpatic neuralgia and fibromyalgia. For a while I was off of everything then severe pain problems resurfaced and my Rhematologist wanted me to try all the new stuff so I tried Saevella, Cymbalta, Lyrica and then an oldie Zoloft. I could not tolerate any of them so back to the Gabapentin. One unexpected benefit though to being back on Gabapentin was a renewed ability to sleep for longer periods of time but only at a dose higher then I had previously taken. I don't think that pain was the reason for waking so frequently I'm thinking more along the lines of NE surges. Of course I don't really know but I am thankful for the improvement.

How wonderful that you have doctors at home that have been able to help you and that you are moving forward. Hopefully you wont require the services at Mayo or Vanderbilt but it is reassuring to know they are there if needed. You're right in that traveling is a big consideration. I live in CA so I went to Mayo,AZ. I saw Dr. Goodman ( Neurologist ) as well as many other doctors. They are amazingly thorough there.

In regards to reconditioning, the ultimate recommended goal was 30-45 minutes of walking or recumbent bike daily and exercises to strengthen lower limbs and abdominal muscles. At this point I am able to walk about 30 minutes 5 days a week unless I am going through a set back period. I walk slowly and on a flat surface. I have a huge problem with inclines and stairs but I'm hoping that will change. I try to do the muscle exercises also 5 days a week but I'm afraid I forget them sometimes. That's great that you can tolerate some time on the recumbent bike. I'm sure that works one harder then just flat walking. Do you think you would be able to walk more easily then use the bike ? I have often wondered about using one those bikes.

I hope you find something that helps with your sleep and continue on in your forward motion.

Janet

[SarahA33]

Hi Janet,

Do you mind sharing how long it took you to "build up" being able to walk about 30 minutes? My goal is 15 min and I can walk around 10 min so far. I would love to walk... I used to walk my dogs all the time but am unable to now. I go very slow on the bike and it works well for me because I am sitting. When standing up my heart rate just goes too high. Dr. Joyner from Mayo in MN is wonderful... he's the reason I'm doing the bike. Its the first thing that's helped (phone consults over a few month periods with him..) He runs their exercise physiology lab there, I wonder if it's possible for your dr. in AZ to make contact with him before your next trip out there to see what his input is..He had a ton of ideas that I don't mind sharing with you if you are interested...

Postural changes are easier with the Florinef but still require thought and time. Stairs are still awful and unfortunately they are part of my daily routine no matter where I go. I do notice a lower heart rate when I do have to walk up the stairs but it takes me forever and I sometimes wonder if I'll pass out before I get there. I got stuck in the elevator at my doctors office at the hospital a couple of months ago and absolutely refuse to go in there again so Im stuck with 4 flights of stairs. it takes forever to get up there.

Also.. I was wondering if you be so kind to share your med list if comfortable with doing so.

It caught my attention that you mentioned pain not being your issue with sleeping, for so long I thought I couldn't sleep because of the pain. I agree with you that it has to be the NE surges because on better days with my migraines I still am unable to sleep. Do you find that medications that are prescribed to you have little or no effect sometimes?

Thank you for being so open to sharing all this with me.Its nice to know I'm not alone..

[SarahA33]

Maia,

sorry to hear about your problems with sleeping also. Do you feel tired throughout the day?

Also.. do you take any vitamins or anything?