Most Crippling Symptom

[icesktr189]

I have been pretty upset because a symptom of mine has came back with full vengance when i first came down with POTS i had what felt like panic attacks. where im shaking on the inside, cant concentrate, and feel like i have been injected with shots of adrenaline. i felt like this for 6 months straight and lost over 30 pounds and was very sick. finally i was put on meds like klonopin and lexapro also midodrine and so forth. when i was feeling almost back to normal i started smoking again. i know how dumb i am! haha. then i started to get off the lexapro and klonopin because i felt really numb and surprisingly had very little side effects. i have not had that "POTS panic attack" since then. however i had to quit smoking, and now i have that feeling 24/7. im loosing weight again, and feel like i have lost total control. yesterday i was on a verge of a breakdown, so i had four puffs of a cigg. and literally all that feeilngs went away. i feel horrible because i should not smoke even four puffs when im prego, but this feeling is taking me over. i just lay in bed shaking all the time, feeling like im loosing my mind. unless i am smoking or drugged up, i feel this way. i have heard some of you mention this feeling, but i feel it ALL the time now. is this normal? i cant live like this at all.. i can handle dizziness, fatigue, you name it but not this symptom. i dont want to get back on klonopin, but i will if i have to. i just really need some help and i have no clue how to explain this to my neuro because they will just think that i have anxiety disorder.

[delphicdragon]

Anecdotal Evidence shows that nicotine increases BP and can actually be used as a POTS treatment. Have you tried Nicotine gum or something similar? That might give you the effects you need without doing harm to your lungs. I'm not sure how it effects the baby so I would ask before trying this, but it's a thought. I know tiny amounts of alcohol (one sip) can help me get through the panic attack part of POTS. I think it calms down my nervous system, b/c my bp tends to be stable.

I wouldn't call it a panic attack explaining it to your neuro. I've been advised not to call them panic attacks (by my endo) but adrenaline rushes or POTS attacks. Both won't get me a ticket to a psych.

Good luck.

Sara

[scarfgirl]

Nicotine is not considered healthy for a baby, although I had trouble getting information as to the exact risks. It does affect the fetus, and it looks like the effects on the fetus are the same as the ones to the mother, just to a lesser degree. Pretty much everything I found was focused on getting pregnant women to quit smoking and indicated that nicotine replacement therapy was almost certainly healthier than smoking, but I couldn't find a study that really examined the risks of nicotine alone. So I'd be careful, and at the very least use short term nicotine hits (gum) instead of long term dosing like patches.

Sorry I don't have any research links for you, internet is acting wonky so I'm just talking from memory here.

[scarfgirl]

If you're worried your doctor won't take you seriously, I also have stuff you can show your doctor that explains that these anxiety feelings are more physiological in nature (like you said, from adrenaline) than psychological. Of course, all that stuff is back in my Seattle condo, but I'm sure the lovely research peeps here can provide you with that information as well. They're awful smart.

[icesktr189]

thank you for looking all that up! its just so frustrating because i dont want to hurt my baby, but i cannot take this feeling for much longer.. that is what i am worried about is that they are just going to say its all in my head and from anxiety disorder. but i am going to point out that i have not felt this way in 2 years until i quit smoking. and i know quitting can cause anxiety feelings, but its been over 8 months since i have so that should not be an issue anymore. and i also do not have any reason for anxiety.. it just comes on and off and really it is based on my symptoms of POTS. ughh so frustrating but thank you for listening!

[erickamcc0523]

I started smoking again about 3 months ago, and that's when I noticed my symptoms getting some better. I was using an e-cigarette (basically it's a cartridge that holds liquid nicotine, an atomizer that turns the liquid into a vapor with a battery), but it wasn't helping as much as real smokes. I want to use the e-cig again, mainly because, though I'm sure it's not completely healthy, it has to be better than real cigarettes. Plus, the maintence cost is much less in the long run than real cigarettes. One downside to the e-cig, at least for me right now, is that I have a too high nicotine concentration, and when I inhale, it's almost like it paralyzes my lungs and I wheeze like crazy and it's bad enough that I'm short of breath.

I do have these POTs "episodes", too, and I'm sorry that you're experiencing them full time. How quickly or slowly did you come off of the Lexapro? I ask, because though I haven't been on Lexapro (though I have been on many different anti-depressants in my life), this reminds me of the side effects of withdrawing from a few other anti-depressants.

[icesktr189]

yeah i have not tried those kind of cigarettes, i mainly smoked camel lights and i did smoke at least a half a pack a day. but ill try those kind when im not pregnant . my problem is is that smoking almost cleared those horrid symptoms of "anxiety" related to POTS.

its been a long time since stopping lexapro.. probably about a year and a half or so.. this past year i have only been on salt pills, lots of liquid, and of course smoking. its quite amazing how much the smoking helped me out. i really noticed when i quit. i just want to find a healthier habit, but it is a really quick fix for me an im worried after birth im going to go straight back to them again

oh and i weaned of VERY slowly on lexapro. i think it was six months.. i just cut the pill back until there was basically nothing left to take lol. had no side effects, but i did start smoking a lot more.

[wareagle]

Hey Dani...I used to have that a lot too. My doc put me on Clonodine to help relax my sympathetic nervous system. I started at 1/4 a pill and have increased it to 1/2 without any problems. I've been taking it for 4 yrs. now and really don't have any side effects other than some drowsiness (I take it at night). I don't know if this is something you can take with pregnancy but it may be worth asking your doctor about it. If you are able to take it I would start at the 1/4 dose and increase if you need to. It has helped A LOT with those jittery/panic type episodes...I really don't have them anymore.

Good Luck and keep us posted!

[icesktr189]

hi wareagle!

is that a type of benzo? i have tried ativan (way too strong for me) and of course the klonopin.. helped out a lot but i could not drive on it. i was pretty loopy at even half a pill

[wareagle]

Clonodine is actually a bood pressure med that's been around for quite awhile...so no...it's not a Benzo! I think it's listed on DINET's "what helps" section if you want to check it out.

You can also take Benzo's with the Clonodine if needed but I've never had to add them.

[icesktr189]

okay thank you! ill definitely mention this to my neuro when i see him next week. i just know i am going to need something soon!

[StacyRN]

Oh, I definitely know the jittery feeling you are talking about, it is my WORST symptom, because it is so hard to live with! It makes me want to scream, and prevents me from sleeping, doing anything, and I just lay there MISERABLE! Taking Tramadol (which is a synthetic narcotic) helps to calm it down, but this isn't the best med to take, but it's all I know so far that helps. If anyone has any other ideas, I would love to hear! I will look into Klonipin and Clonidine, thank you!!

And I hope you can find something that helps besides smoking... for the baby's sake! It's hard, because meds have effects too... I hope you find something that works for you AND the baby, and I totally sympathize with the misery you are feeling!

Hugs

[Maxine]

Nicotine is a vaso constrictor, and it's possible it was helping relieve the blood pooling when you smoked. With you being pregnant it's difficult to know what meds would be safe for you right now. This is something you definately need to follow up with your doctor about.

It's a horrible feeling when the adrenaline starts pumping-----I know, because I have been having some set backs myself. Someone suggested a little caffiene, but I was afraid, as who would want to add a stimulant to an already overstimulated person? I'm assuming when we dilate too much, our adrenaline is trying to compensate and help the vessels constrict. I know when this is happening to me, as I can see the nice plump veins in my hands disappear. Check your hands out when this happens.

I know when I'm feeling really sluggish a few sips of coke helped me out, and I felt energized. However, then I end up with palpitations----skipped beats.

Dr. Grubb suggested green tea as it's less caffiene. We discussed florinef, and midodrine, and with my upper spine compression and vertebral artery issue I can't have SPIKES in BP, so I have to use more natural methods. I'm already on wellbutrin to help constrict the vessels, and Dr. McDonnell from the NIH study was already concerned about BP spikes, but so far have not had sustained spikes in BP, so I'm still on the same low dose. I have had some spikes during the adrenaline surges, but BP goes back to normal or my low BPs.

How is your BP during the attacks? I do get a little concerned because my diastolic will still be 80s, and my systolic will get low------->i.e. 102/86.

I hope this passes for you quickly. Klonopin helps me also. I usually take half the prescribed dose, bu ob really bad days I take the full dose.

BIG HUG,

Maxine :0)

[kayjay]

I can't say enough about Klonopin at bed time. really has helped me!

[MomtoGiuliana]

I hope you are under the care of a dr who already is familiar with you and your condition prior to pregnancy. My experience was that it is hard to get drs to take you seriously when you are pregnant and having POTS symptoms. The see a woman who is preg/post-partum and determine the symptoms must be mental illness derived. I was told I was a perfectionist, etc. Crazy.

The new DVD that DINET just produced could be helpful if a dr would take the time to watch it.

I agree that I would not describe the symptom as a panic attack. I had these too--even more so late pregnancy and post-partum. It's not fun. The only thing that helped me a little was to work on meditation/calming skills. It didn't take the symptoms away as much as it just helped me deal with them a little better.

Have you tried getting IV saline and does that help--even tho temporary?

[icesktr189]

hi! thank you all for the replies!

klonopin REALLY calms my nerves down, but i can tell i fell really drugged up on it. i wish i could have that calming effect without the drugged up part.

during the attack my bp really ranges.. a lot of the time my blood pressure cuff wont even read and that only happens during this attack. so im guessing it must be pretty messed up.. i totally know about the vein thing! its pretty crazy to watch the ones in my hands

have any of you noticed that when you get this panicky POTS attack that your brain fog gets worse? mine gets really bad and that makes me panic even more. so i probably contribute to it even more.. its just really hard to calm myself down and relax. ughh.

good luck to all of you that experience this.. i know how much it stinks. i would LOVE to get rid of this symptom out of all of them because for me its the most disabling.

[Maxine]

Dani,

This is the most disabling symptom for me also. I can muddle through the rest, although still not able to function at normal capacity, I can at least venture out on my own for small errands, have somewhat of a social life, and get a few things done around the house that my body allows me to do. When I'm having those spells---(which a friend of mine and I nick named "George" back in the 80s when I first experienced them), I can't do much of anything. I lay pretty low when this is going on.

Back in the 80s I took phenobarbitol, and it was like the attack never happened. I know these spells are of neurologic origin, as phenobarbitol is a seziure drug. Back in the early 80s these spells only lasted a few months, and I was diagnosed with MVP at the time---(now I'm told I don't have this). It's like the phenobarbitol had a long term effect (I stopped taking that in about 6 months), as I didn't need meds again until 1990. When the spells came back they were worse, and I was given beta blockers, and xanax. The two worked well together, and I stayed on the xanax for only 6 months. This was my only symptom other then the brief chronic fatigue I mentioned before. I didn't crash completely until 2000, and in mid 2001 was diagnosed with POTS, then the rest followed---- .

I hope "George" leaves you alone quickly! I know they come in cycles, so they will go away---- .

HUGs,

Maxine :0)