Tammy

We need to find a way to educate everyone about this illness! I see signs everywhere about "Bike Ride for the Cure of MS" or "Eliminating Lyme's Disease" or "Race for the Cure" and so on. YET, I have never seen anything about "Dysautonomia Cure Fundraiser" or the like.

The reason I'm considering taking it more regularly is to get some quality of life back as I'm completely home bound due to severe ANS issues from POTS. My doctor hoped it would calm down my ANS ... ie., adrenaline rushes, tremors, shaking, etc. However, as I read some of you take it for sleep, I actually get insomnia from it, so if I do take it, I have to take it in the morning, so my body is reacting to it a bit differently also. I guess I'm going to talk to my doctor when I'm somewhat functionable enough to get back in to see him and see what he thinks of my concerns. Thanks for all the input

Hi! Well I think I've posted about how much Klonopin does seem to help me at times, but here's my dilema... I only take it on my absolute worst adreanline rushy days, so it's not consistantly in my system because I'm afraid of my body getting addicted or that if I find it works well, at some time, my body will become tolerant of it. Last summer I went through months of complete **** because of coming off of Prozac, so I'm now terrifed of going through that ever again. I felt like a drug addict in detox as I ended up with discontinuation syndrome (on top of the POT Syndrome)!!! Has anyone here been on Klonopin long-term and done well... has it given some of your life back to you? I'm just not sure what to do here and my doctor wanted me back in a month to decide how I was doing on it and that was back in February!!! I'm feeling so sick right now, so hopefully this made some sense

Welcome Buffy, Well it looks like you've received many welcome's and ideas on what may help with the nausea. I have tried Toprol and if the nausea is due to adrenaline issues, yes, it will help. BUT... here's a tip. If your doctor has started you on say 25 mg, you may want to start with a smaller dose. Most doctors don't realize how sensative we are to dose/amounts of medication. It took me 8 years to figure out that I need to start with 1/4 of a typical dose or I would end up ruling out a drug that may be helpful due to severe side-effect which sometimes had been due to how much I was starting on. I'm now on Atenolol which does help the irregular heart beats, fast hr, and adrenaline-like surges - which do cause nausea also. Ummm, what else...oh, I can relate to being recliner bound also. Periodically I attempt to get out but my max is about 20 minutes (including car ride time), so it's very limited. I have a 3 year old and I love her dearly but most days even trying to read a story to her is challenging, so we do 'free talking e-books' together on the notebook computer and that helps me feel like I'm somewhat able as a mother Hope you feel at home here on this support site... it is a great place to find understanding and compassion with POTS/Dysautonomia. Take care and Bless you- Tammy

My BP does this also. I also reassure myself that when I'm sitting down and resting after the spike and if it goes down to my normal low blood pressue/hr, than I know it was just being upright due to my orthostatic issues that causes the spike. I guess I have talked to my cardiologist about this and he says this is just what my body does and as long as it can adjust back, not to worry. Take care.

You may want to discuss this with your doctor... Just ask him when you get sick, it causes your heart rate to increase immensely - what you should do when this happens. Of course the basics of fluids, tylenol, and sleep help too. Take care.

Hi Jaime, Yes, there are still many of here from when you posted more frequently. I think in 2006 I use to read many of your posts more often. Glad to hear you have been discharged (finally!) and are living in TX. Now you can get the much needed rest our bodies need Take care, Tammy

Exciting to hear that a friend of yours has met other POTS patients... very rare to hear that. I'm about 3 hours away from you, near St. Cloud and haven't heard of any other POTS people right here, but my cardio has another patient near the citiies that he also treats, so there are a few of us in MN.

Sadly, I've had a cortisol test and it shows that it is normal at the doctors office. However, at a naturopathic doctors office, who did a saliva test, it showed drops in cortisol throughout the day more than it should... so I was hoping we all have this and that the skin coloring is just normal for us I can't seem to get anywhere with it from doctors as they just shrug their shoulders and say it looks like hormonal problem but no one can figure out what! thanks for the input though.

What seems to help me the most is a vitamin pill with B's and iron and I take the highest dose it allows during those days of the month. I also eat Buffalo meat during this time, which also helps (cow meat, chicken, etc. doesn't help at all). We all already increase our fluids and salt, but if you aren't doing that, those days are especially important to have plenty of fluids to drink. I don't know what else to tell you to try, and even all of these things don't make it perfect but a bit more toleratable for me.

Just wondering if we all have this problem... maybe it is just age, but my elbows, knees, knuckles, and scars are all dark brown, but the rest of me is pale white from no sun exposure. Is this a POTS thing? - Tammy

For me, it has depended on the nurse taking the readings. I've had nurses who will try over and over to get a reading they feel is within 'normal' limits, as they look at me really confused when they try at first and this can happen when I'm just sitting, not having changed positions. When I've had my orthostatics tested, they have me lay down - test, sit up for a minute - test, and then standing for 3 minutes - and test. However, mine will get worse after 10 minutes of standing so this doesn't always show an inaccuracy. When I first wake up, this is usually when my heart rate goes from 67 to 117 just from standing up, but my bp will raise and then become narrow after 10 minutes or so, i.e., 73/89 - so not sure how this all falls into POTS. So to answer your question, I believe they want to see the surge of over 30 beat per minute from a laying down to standing position. Some peoples blood pressure will fall also, and this is another thing they are looking for. - Tammy

I would bring good movies to watch so that all the conversing with friends I see don't over-stimulate my ANS... so we could quietly sit together and enjoy the presence of each other without being in an exhausting social setting

I avoid people like this and have developed a "screw them" attitude. It still hurts but I figure why would I want to spend time with anyone who doesn't understand or try to be supportive... I just don't have the energy for them anyway

You might want to give your body a "test" at working. Spend a few days in a row doing activities that you'd be required of at work, taking only the breaks you'd be allowed to at work... you can't just sit down and rest at work when your body says it needs to, so if you can go a week with working in the house, shopping, lifting things, etc. without resting and continue to feel well, then going back to work might be a possibility for you. My experience is I tried going back to work and got worse than what I was to start with, so for me it was the worst mistake I've made. Don't let others around you pressure you into feeling like you have to go back to work because your feeling better, because POTS never goes away, you still have this illness. You may want to tell them that even though your doing better, there's a chance that going back to work will cause regression in the progress you've made, and that keeping symptoms at bay is more important than returning to work at this time. Take care.

Well, first thing is are you well enough to tolerate sitting in an office for an hour? If not, this might not be an option at this time. But if you are well enough to drive yourself to appointments and can sit upright long enough to counsil with them, than go for it. Sometimes I need to talk to someone about this hellish illness, but I'm too sick to access an outlet, so that's why I pray Take care

First year for me I had no appetite, the second year it wax and waned and now, mostly, unless I'm having a very symptomatic time during the day, I can eat. But something stressful in my life will throw my appetite out the window for a few days at a time, so it really varies. Hope your appetite improves with time... I'm sure it will, as it does for most of us. If it's the nausea that is bothering you, you may want to try ginger tea... it really does help and you may feel hungry after about an hour of drinking the tea. Take care.

I get both the fast and slow beats. A beta-blocker (atenolol) has helped me in some ways with the BP/HR issues. But it does give me even more fatigue. Metropolol is a good drug to try out - for me, I had severe insomnia from it, so I switched to atenolol, but it was the drug my cardio would have preferred for me. You are probably right in trying a small dose first as most of us are sensative to the amount of meds we take. As for the bloating, I get that in my stomach too and I'm always wondering what that is too, but I never really think about it being blood pooling... kind of scary to think about blood sitting someone where rather than flowing about

Having also suffered a miscarriage at 12 weeks, I can understand also as many of us here how difficult it is to loose a baby. However, this was before I developed POTS. It is very common sadly. My neice had a stillbirth full-term and she was healthy, so sometimes these things happen without reason. Sending you a big hug and God's love - Tammy

Feeling low on oxygen when I've been upright for a bit. Extreme/Profound weak spells (last about 2-3 hours before I'm able to move - even opening my eyes during these episodes is difficult) Heat/Cold Intolerance Sensativity to sound/light Lighthead, tingling, SOB, weakness, & fingernails turn purplish when trying to sing/read/carry a conversation/blow up a balloon, etc. Adrenaline surges - panic type symptoms (but without fear or emotional connections) Narrow Blood Pressure (95/78 typical reading when on feet too long) Tachycardia spells (on beta blocker for this) Urinating frequently (especially after weak spells and also when having adrenaline surges) Craving carbs/sweets (try to avoid these but the cravings are still there) Unable to lift anything more than a few pounds without pre-syncope symptoms

For most of my symptoms I see an electrophysiciologist, but alot of the symptoms I get doesn't fall into heart issues (and I know they are all connected somehow, but my EP only treats me for the irregular rhythms and BP fluctuations.) So I'd like to focus on the ANS with this natural doctor but not sure which ones fall into this. Would the times I feel extremely weak after reading a book to my daughter, and my nails turn purplish, and I feel like my heads in the clouds be considered ANS dysfunction... or does this fall into another anatomy area? Also the heat and cold intolerances... where do they fall into? Thanks for any help with understanding what symptoms are relating to which system (cardiac, endocrine, nervous system, etc.) - Tammy

Yup, I have the same thing happen to me. Can't lift anything even remotely heavy. When I first got severe (had POTS for a few years before it became disabling) I had a 6 month old and lifting her up out of her crib, holding her, changing her diaper, etc. was nearly impossible - I was so weak I shook and crawled to get to her crib as needed as was too weak to walk. I also have SVTs but unsure of the kind but my heart does the same thing where I get 250 beats per minute for a short time.. scary! I get so weak also, which you didn't meantion so that might be a little different though. Are you on any type of beta blocker? Take care, Tammy

Am I the only one that is unable to do any exercise? Just standing up for a few minutes kicks my butt.

Hi Ernie, Wishing you a wonderful birthday! Thank you so much for the hope which I really need right now. I keep hoping to be more functionable at some point, but than I try to do more than lay in my recliner and get sicker, so lose hope but maybe someday I'll find a doctor that won't give up on my situation. Take care, Tammy

Hi! Yes, I've tried Pindolol and also SSRI's... Um, took a few years but found Atenolol to work best for me and I need to avoid SSRI's. We are all so different in what works and what doesn't. After years of learning, when you do decide on a med to try, start off on a lower dose than what your doctor is giving you, split or even quarter the dosage down and slowly work your way up over weeks time, this is the only way I've found I can give any new med a try, otherwise I can't tolerate anything. Hope you find some meds that work to help control your symptoms a bit.