I Am New And Have Questions

[runningshoe]

Hi.

I was recently diagnosed with POTS and have lot of questions. I am 42 and this all started with me almost passing out while driving my car (everything got dark but it was brief). Lots of tests later and a good cardiologist got me to the tilt table test which I guess I flunked! I have high blood pressure and this makes things a bit complicated. I started the high salt diet last week and a few other meds. Anyways, on to the questions. Do any of you have the sensation that your feet/toes are burning. Kind of like after you have been in the cold to long and they start warming up? For those of you who don't take sleep meds (dr said sleep wouldn't be a problem but it is) do you wake up to strange sensations in your body (buring feet, heart beating, feeling agitated/adrenaline? If I don't sleep well I am much worse of the next day. Do most of you find this to be true? Do most of you still drive? I am fine around town with the kids in tow but do not like the highway since this started. I feel distracted and it is hard to concentrate. Does this sound familiar? How long did the salt diet take to help? Did you gain weight? I have always been fit and like to run, walk and swim but that was pretty much put on hold for a while. I have just started back with yoga (feels good to get the blood back to my head in the upside down positions), pilates and a litte walking. I take it slowly and need time to rest after. My worst days are when I work a full day (preschool teacher) and take care of my kids etc. I can be leveled by headaches and fatigue on those days. Does that sound familiar? Generally feel very upbeat about life and have been through muc before but somedays I can get a bit weepy. I feel moody since the salt diet started. Any connection? Well I am sure I will think of more questions and I thank you all in advance.

Lina

[Jacquie802]

Hi Lina,

Welcome to the forum. For me fatigue/lack of sleep is one of my worst symptoms all around....I have not taken any sleep meds or anything like that for it though. I do get the numbness/tingling in my lower extremities, especially my feet. I have been diagnosed as having autonomic neuropathy/POTS. Also on my TTT it showed that I had a decrease in cerebral blood flow...(they know this because they used a helmet type thing while they did the TTT).

I always wake up at least once during the middle of the night due to sweats, palpitations, or as you describe an adrenaline surge. I was prescribed a Beta Blocker to help with the palps that wake me up during the middle of the night but I find that when I take the BB, I wake up in the AM unable to move because my BP is soooo low from taking the BB...So right now I am just trying to deal with the palps, etc.

As for the driving, for me it depends on how I am feeling that day as to whether or not I drive and also the distance I am going to drive...I usually have someone else who is a licensed driver come along with me just in case I get an episode of dizziness, etc.

Have your doc(s) put you on any meds to help control your symptoms?? Hope you can find some treatment that helps you! That alone can take some time...

Jacquie

[pat57]

I have Neurocardiogenic syncope, so things might be different- (I don't know). BUT, if you have warning time with your near faint that's one thing, but driving with uncontrolled syncope can be deadly. I lost my license for 4 years, because of uncontrolled syncope. Since you did not actually pass out- I ASSUME- that is why you still have a license. Please do pull over if you don't feel right.

I do not get the sensations you mentioned.

If I don't get good rest, I am extremely crabby and exhausted.

I did get moody- and headaches on florinef. Was taken off because BP went too high.

One of my common symptoms is feeling dazed. You wrote "I feel distracted and it is hard to concentrate". This -FOR ME" means BP drop. I am able the raise it with a brisk walk and I am on meds that prevent the bp from casueing a faint- "thankyou Jesus".

[Rachel]

Hi Lina,

Welcome to the forum. I hope you find the information on the DINET forum helpful.

My answers to your questions:

- Do any of you have the sensation that your feet/toes are burning?

My feet had been cold for years, but then for the past year they were hot. My feet would be warm and sometimes feel like they were burning. I slept with ice packs on my feet for about 9 months. Recently, though, my feet have gone back to being cold. I don't know what causes this. But I figure I can blame it on POTS!

- For those of you who don't take sleep meds (dr said sleep wouldn't be a problem but it is) do you wake up to strange sensations in your body (buring feet, heart beating, feeling agitated/adrenaline?

I don't take sleep meds, but I don't sleep well all the time either. Yes, sometimes my feet will be burning when I wake up. Sometimes I'll wake up from my heart racing or pounding. Many times I don't know why I wake up, I just do. The agitated feeling is usually a problem for me when I am trying to go to sleep.

- If I don't sleep well I am much worse of the next day. Do most of you find this to be true?

Yes. If I don't get a good 10 hours (or more) of sleep then I am more tired and weak the following day.

- Do most of you still drive?

No, I don't drive at all anymore. I don't trust myself behind the wheel. It is too hard to concentrate. Plus, I can't sit up long enough to get anywhere and back.

- How long did the salt diet take to help? Did you gain weight?

Yes, I gained weight. I don't remember how long it took the salt diet to help originally. But when I'm extra tired or my bp is low, I take an extra dose of salt and rest. I notice some improvement in a few hours. I'm not sure how much of that is from salt and how much is just from rest.

- I can be leveled by headaches and fatigue on those days. Does that sound familiar?

Fatigue will level me. Thankfully, my headaches aren't usually very bad. Ibuprofen takes care of my headaches.

- Generally feel very upbeat about life and have been through muc before but somedays I can get a bit weepy. I feel moody since the salt diet started. Any connection?

I don't know about a connection between a salt diet and moodiness. I get moody and weepy sometimes. Sometimes it is just from mild PMS I think. Otherwise, it usually happens when I am extremely overtired. I say extremely overtired because I am always overtired. But it isn't until I am extremely overtired that I get moody and weepy.

Hope I've been able to hellp.

Feel better,

Rachel

[deucykub]

Hi, Lina:

Welcome to the forum! I am a fairly new diagnos-ee myself and have found this forum to be a wonderful source of information, support, and compassion. That must have been terrifying to have everything go black on you while you were driving! I've had black-outs since I was really young, and it challenges the simple act of walking, let alone driving. I'm so glad you came out of it okay and were able to find a diagnosis.

I'm a little surprised that your doctor put you on a high salt diet with high blood pressure. When my doc put me on the high salt diet, she mentioned that my blood pressure being low made the high salt diet okay. Are they monitoring your blood pressure closely? I think they usually use the high salt to help increase blood volume, but it may be dangerous if your blood pressure is already high. I'm not sure though...

I don't have burning in my feet... Sleep is tricky for me because I also have fibromyalgia, but it seems to have gotten worse since POTS struck. I am on 10 mg of Flexeril to help with sleep for the fibro, and that used to knock me out cold; however, since POTS, my sleep seems to be worse. Good sleep for me is a must. Without it, all my conditions seem to flare.

I drive as little as possible. I get a very wierd, disconnected feeling after about 10 minutes of driving. It's like the information around me (where the cars are, where I am, sense of the speed I am going) just doesn't make it to by brain anymore. It might be disorientation? I'm not sure if anyone else has this. I feel completely out of control of my vehicle when it happens, so I pretty much stick to just driving to doctor's visits and the grocery store right now.

Difficulty with concentration is a symptom of POTS to my understanding. I have a horrible time working, even from home, because I can't seem to follow processes or think logically. My field is highly dependent on details, and I get lost just trying to pour a bowl of cereal - I'll forget which step comes next and just stand in the kitchen and stare, or I'll do something silly like pour my cereal on a plate (thank goodness I caught that before I got to the milk! ).

Exercise is a no-go for me right now. Even 5 minutes on an exercycle will knock me out for the next few days. If I push through and try to do that several days in a row, my body will head toward a HUGE crash.

Fatigue is also my worst symptom. It's actually the only thing I noticed. It wasn't until I took a pulmonary function test that they realized my heart was whizzing along at around 150 bpm. The fatigue is totally disabling and mind-numbing. About once every two weeks I'll have a headache severe enough that I just go to bed and sleep. Other than those times, my headaches are mild and probably due to medication (midodrine).

Everyone seems to have a different collection of symptoms when it comes to POTS, although there is a lot of overlap.

I don't typically suffer from moodiness or weepiness unless PMS or frustration with the illness in general is involved. About once every 3 months I'll have a day of self-pity where I am so sick of dealing with chronic illness, and on that day, I'll cry, watch corny TV, and eat lots of ice cream. Those days are pretty rare though. Have you checked your medications for side-effects? If those symptoms become severe, you may want to tell your doctor.

I hope that you start to feel much better soon! (Sorry this post is so long )

[lthomas521]

Hi Lina:

Sorry to hear that you are sick.

Does the doctor know about the burning sensations in your feet? That sounds worrisome to me, because it suggests some sort of nerve problem. Or it could be due to lousy circulation due to POTS. Who knows? You might want to ask your doctor if you can take a lipid-soluble thiamine supplement such as benfotiamine. The lipid-soluble thiamines are naturally produced with thiamine-containing foods are cooked with garlic or onions, and they have been well tolerated in patients with diabetes. They actually succeeded in reversing diabetic neuropathy. Benfotiamine and related compounds are available without a prescription. They smell like garlic, because they are produced when thiamine reacts with a compound in garlic. The advantage to the lipid soluble forms is that they are more easily transported in the body. You don't have to depend on having a functioning thiamine transport system.

You might also ask about magnesium glycinate (a chelated magnesium). It really helps to prevent my migraines.

[corina]

hi lina,

i don't have much to add, just wanted to say hi and welcome at the forum!

corina

[runningshoe]

Hi,

Thanks for the replys. I am seeing my dr weekly to check blood pressure etc. and yes it will be tricky with my hypertension. When you guys talk about a CRASH what do you mean? It is fatigue or a dizzy, tachy experience? I is comforting to hear others talk about the sleep problems and the disoriented feeling during driving - both of those are driving me crazy. Anybody know why we feel crappy even when we are not tachy? Is it just the wear and tear? I wish everyone a great afternoon and a good nights sleep.!!

[pat57]

'POTS patients use about three times more energy to stand than a healthy person (Grubb, 2002). It is as if these patients are running in place all the time. Activities such as housework, bathing, and even meals can exacerbate symptoms"

potsplace.com