Can't Function In This Heat---advice? Kind Of An Emergency.

[MelissaCrystal]

Hey guys,

So I'm in the bay area, and it's been getting into the 90s----I'm from Sacramento, and back then I had air conditioning, so when it got to 110 I'd just stay in-doors, but the Bay Area CA doesn't have air conditioning in the houses, so I'm miserable.

My BP is 70 over 50 right now (it has been worse, 40 over 20, so I think I can handle this for the time being), my heart is going crazy with tachycardia. I haven't taken my pulse, but it's really fluctuating and jumping around so I don't even know what number it would be steadily. Whenever I talk or breathe, my heart speeds up, and of course whenever I move I black out and get ready to faint. So I'm basically stuck where I am. My chest hurts a LOT, and every pump is a painful squeeze. It's really sore from going on like this for two days straight. I'm sweating unbearably.

So I'm only 21, my heart is healthy, but this POTS is really putting my body through a lot. I'm exhausted and I feel like I'm dying.

I called all of my doctors today---all of them are either busy all day in surgery/deposition or off for the weekend. I talked to a hospital doctor and he says he wants me in the hospital because my BP is too low and it's CAUSING my tachycardia---because I guess he says your heart pumps faster when your BP is low. Good to know. He also said that my Metoprolol beta blockers are contributing to the low BP, but going off of it would be dangerous to my body too. He wants me to go to the hospital to give me different meds, but I just cannot afford it financially.

So do you guys have any tips on getting my BP back up and my HR down in this hot weather? Yesterday I spent the day in cold water and that didn't help. I've been drinking a LOT of Gatorade and water and sweating and peeing it all out almost instantly. Hard to keep up. What else have I tried.... I don't know. I guess that's it. Has anyone else been in this situation? What did your doctor tell you to do?

Do you guys know what an electrolyte imbalance feels like? I was curious.

[MelissaCrystal]

Btw, this is really making me think about getting a Pace-maker. Anyone have experience with those? Do you think it'd help me in these kinds of situations?

Also, a question for people with EDS----does this sound like EDS, cause I've been suspecting that I have it but no doctors have had reason to test for it yet. I just recently was diagnosed with corneal disease too, which I heard is often linked to EDS. What do you think?

[flop]

Hi, sorry to hear that you are having such a rough time in the heat. Trying to stay cool isn't easy. Hanging a cold wet cloth in front of a fan can create a nice sensation, also sponging with cool water can help. I avoid cold showers/baths as they can be a shock to the system and create other problems. Do you have any public buildings with a/c that you could be taken to or even sit in someone's car with the a/c on?

Pacemakers are unlikely to help in this situation. They are designed to speed up the heart when it goes too slowly - doesn't sound like slow HR is a problem for you.

EDS may be a factor in your overall situation but it wouldn't specifically cause the symptoms you describe, this sounds like POTS triggered by heat. The only way to know about electrolyte imbalances is to get a blood test done, you may need some IV fluids if you are very dehydrated. You may be able to get this done in the ER without having to be admitted to hospital.

I hope you feel better soon,

Flop

[MelissaCrystal]

Welp, I was able to get my BP up to 90 over 70 by eating a ton of salt pretty much and drinking a lot of fluid. I've been sitting too. Buuuuuuuuut my dizziness is worse than before. I feel like I'm in a drunken dream with waves of lightheadedness hitting me like a train. I really hope I'm better before tonight---I have so many plans that I don't want to cancel =(

My doc got back to me today and told me to go off the beta blockers because it can lower your BP and it doesn't seem to be doing much for the tachycardia. I'm REALLY scared of this because I'm MISERABLE without beta blockers. But she's the doctor, if she thinks it'll make me feel better than I do right now, I'm gunna do it. I just hope I'm not more miserable.

So as of right now, I'm on no meds. She also wanted me to go off the Desmopressin and Paxil. .... I feel like I'm back to square one with everything. Thanks, California weather.

[Bella127]

I'm so sorry to hear you're going through this horrible heat with no A/C!! What about buying a window A/C unit for the room you're in the most? I have central air in my house, and even with THAT on, I STILL had to get a separate window unit for my room since the house can't be kept to freezing temps for everyone else.

So I would definitely look into that, because to me that's the most permanent thing that's going to help you the most as far as heat- having to apply/reapply cold washcloths to the back of your neck can help, but that will also get very tiring.

Also, have you looked into buying a cooling vest? I haven't used one, but I've heard they can be great for climates with bad heat. I googled "cooling vest" and came up with a bunch of results, but if you go here, you can get an idea: http://store.coolvest.com/merchant2/

I'm not sure what the best kind is, etc., so if anyone else has ever used one and knows of a good brand, etc., they can probably give you some recommendations.

Like you said, it is hard keeping hydrated too because you spend time running to the bathroom...but it will help. Keep your salt content high because this will help you to retain water.

Let me know about the A/C info, and if there's anything else you wanted to ask! I know it can be very hard to go through things like this especially when we are so young and don't know what to do (I am 22). Have you thought about at least getting some type of stand-up fan? I'm sure that doesn't help a LOT seeing as the heat in Cali is extreme, but still. It also helps to try to take cooler showers when you're symptomatic.

Hang in there, and I hope your symptoms get better!

Chrissy

[MelissaCrystal]

My gosh... the third day of feeling like I'm dying from a drunken stupor.

I don't know when this is going to end... I've been keeping cool, eating a lot, drinking a lot, doing everything possible. I took my meds again in desperation to feel better (I have two docs disagreeing, neuro says no meds, cardi says take your meds now!). I don't feel any better. My eyes can no longer see straight for more than 5 seconds. It feels like someone is knocking me over the head every 5 seconds and it causes a wave of dizziness like never before. It feels like I don't know which way is up or down for a second, and it's somewhat nauseating if I keep my eyes open for too long.

I've been communicating with all my doctors, and they've been giving me the same advice as you guys, but other than that they're stumped and don't know how else to help me. I don't know how to recover =( They tell me to go to the hospital if I think I need help staying hydrated, but honestly, I feel OVER hydrated. My belly is so full of fluids that my underwear is too tight!

What's interesting though is that I have never been tested for diabetes....I was desperate yesterday and had my boyfriend go out and find a blood glucose meter. I took it after testing the control substance and testing a friend, and mine was 57. The instructions say that anything below 50 should send me to the hospital, and that I'm faaar in the low range. This was after a day of eating, too, so it really should not be that low. Anyone have any input on that? Eating was not helping it, and not making me feel any better.

This morning my blood glucose was 96, in the normal range (this was after fasting the night). Which makes no sense... NO sense. I am so frustrated. And I feel the same. I am dizzy out of my mind. My BP is 98 over 63, which is normal for me, and my heart rate is only slightly elevated. I cannot find the reason for the way I feel. I am on the verge of a mental breakdown---I just can't imagine feeling like this for ANOTHER day. It's not even that hot...it's like in the 60s, sunny. =(

Sorry for being so complainy. I'm very desperate, and I'm scared that the hospital will say nothing is wrong with me and it'll be expensive for nothing. Le sigh.

Edit: Okay I have an idea. What is drug withdrawal like? Is it anything like this? I haven't taken my Paxil 20mg in like 4 days. I didn't think 20mg was enough to make a diff though... In fact I thought the Paxil was useless and that's why I haven't been taking it...it's doing nothing for me. Do you guys think I am withdrawing from only 20mg of Paxil?

[flop]

GO BACK ON THE PAXIL !!!

Now that I know you have abruptly stopped taking Paxil (Paroxetine) I am sure that it is what is causing your symptoms now (earlier the heat and low BP will have been a factor too). I say this so confidently because earlier this year a pharmacy missed my paroxetine out of my meds refill and I was off it for 6 days before I realised what the problem was. Over that time I got more and more dizzy (not my usual POTS greying of vision but more like being drunk), my eyes wouldn't focus properly, I got very tachycardic. I was having mood swings and eventually I started hallucinating. By the time I got to a pharmacy I was desparate for help. Within a few days of restarting the paroxetine I was feeling back to normal.

Recently I tried to stop the paroxetine for 48 hrs to do some saliva hormone tests - for one reason and another I didn't get the tests done and was going to wait until after the weekend to do them. Those extra days of paroxetine started up the dizziness and feeling spaced out again so I restarted the paroxetine pronto and the symptoms settled within 24 hours.

I know that when I want to come off paroxetine properly I will have to do it very slowly even from my small dose of 20mg.

Hope you're feeling a bit better soon,

Flop

[MelissaCrystal]

Oh my goshhhhhh that's what it is!!! I feel so stupid hahaha.... My doctor didn't tell me this would happen!!! She told me to go off everything, I didn't realize I had to taper. I'm having my boyfriend run to the pharmacy right now to go get my refill. I can't wait to start feeling better. Man. I'm glad my POTS isn't worse at least, glad it was just withdrawal. I was getting so scared I'd have to put up with these 'new symptoms'. Ugh. Thanks for the help. SO much.

[willows]

Sorry your feeling so bad at the minute .

I get electrolyte imbalances and its a sort of sick , head-achy , tired , sweaty , blurred vision time , which in all is almost what I get each day but 1000% worse!

I'm having terrible problems with the heat in the UK to and we have never had or are likely to get AC in the house. I'm spending 99% of my time upstairs laying on my bed in the darkened room with a fan on watching TV or DVDs all day , lots of cold drinks and fruits and an occasional ice cream , I cant eat normal foods when I'm like this and venturing out of my room , even for the loo leaves me dripping and short breathed .As for going downstairs OMG once down its like I'm hit by a brick wall of heat and no air and I cant wait to get back upstairs again ...........except the stairs which on coming down looked fine now seem to be a high as a mountain and every step I take just makes me sway around and I tend to end up on all fours crawling upstairs with my son or hubby behind me to catch me if I should slip and fall backwards.

I've also had a couple of panic sessions trying to get out of clothes when I've soaked myself with sweat so much that the cotton kaftan that I wear is stuck solid to me and I needed to take it off, if I cant get one of the boys to help me at the time I've stupidly tried to take it off myself and got it stuck over my head...................twice I've nearly passed out whilst having this stuck on me like this and my screams for help have been heard half way down our road so much so that both boys have banned me from taking anything off thats got to come over my head without them in the room for assistance.

I hate hot weather . Willows.

[iheartcats]

Oh my goshhhhhh that's what it is!!! I feel so stupid hahaha.... My doctor didn't tell me this would happen!!! She told me to go off everything, I didn't realize I had to taper. I'm having my boyfriend run to the pharmacy right now to go get my refill. I can't wait to start feeling better. Man. I'm glad my POTS isn't worse at least, glad it was just withdrawal. I was getting so scared I'd have to put up with these 'new symptoms'. Ugh. Thanks for the help. SO much.

Let us know if the Paxil helped.

I know when it gets hot and I have no air I feel much worse...but not to the level you are describing. I can still see and my BP doesn't drop to those levels (maybe 90/60).

But what you did for the heat is what I do, too. G2/Liquids, Salt, Rest, Cool Compress...it's no fun. Hope you are better.

[flop]

Please don't feel stupid, you only did what the doctor told you to do! I think that some doctors forget some of the meds we are taking or just don't realise how severe the withdrawal from paroxetine can be. For me the withdrawal just felt like a really severe POTS flare (the dizziness wasn't quite right for POTS but you don't notice that at the time). The first time it happened to me I was really frightened and so glad that there was a reason for me feeling so bad. The second time (only last week) I just felt really stupid - I stopped the paroxetine myself and then forgot that I wasn't taking it so ended up off it for much longer than I intended, even then I had been really dizzy for a day and a half before I worked out why I felt so off!! You would have thought I would remember the previous experience? Stupid brain fog!

Let us know how you get on, it will probably take a few days for the paroxetine to get back into your system properly.

Flop

[MelissaCrystal]

Took a half a day for it to "fix" me, but I am back to my functioning self! Still have pots symptoms when getting up and whatnot, but I can see straight and I don't feel like I'm dying anymore ;p I'll definitely remember how this feels---I see the difference now between my regular symptoms on the bad days and the withdrawal symptoms. Right after I took the Paxil pill again, I felt like I was on a roller coaster, gave me a horrible rush and I felt high for 3 hours. Then I balanced out and my dizziness went away and soooo much relief washed over me. I feel like I'm a drug addict now though, which is scary. Paxil doesn't even do anything for me, and yet my body is this badly addicted to it. When I have the time (to relax) I'm going to slowly taper off of it and find something that does work on me for anxiety =)

Thanks for your help guys. I notice now that the heat is making my life difficult right now, but not taking the paxil was the main problem for sure lol I can definitely handle the heat after putting up with withdrawal symptoms for 3 days....whew.

The interesting part of this experience is the discovery of my low blood sugar. I don't know if that was a singularity or if I do have periods of time where I suffer from having low BS. I'm going to have some testing done on that now just to make sure everything is okay.

[flop]

I'm so glad that you are feeling a bit better and "only" have to cope with the heat.

Paroxetine does help me but I also don't like the way my body acts when it is stopped. A friend of mine had to come off paroxetine before getting pregnant, she did it very slowly initially taking 20mg, then every other day having half a tablet instead of a whole tablet, then she had half a tablet daily, at that point her dr switched her to the liquid form so she could very slowly reduce the dose over about a month. I don't think she had too much in the way of withdrawal - it is the abrupt stopping that causes the bad reactions.

take care,

Flop

[firewatcher]

Hi Melissa,

Don't jump the gun on the low blood sugar thing, I have read that those home glucose monitors are notoriously off on the low end of the spectrum. You may have reactive hypogylcemia, but don't use the home meter to make that determination, let the docs do a formal test.

I hope you are feeling better, it is amazing what tiny pills and powders can do to the human body!