misstraci

Sheila, I'm so sorry to hear about the pain and the new symptoms. I know, or have read, you have been dealing with a lot and feeling terribly lately. I hope things begin to improve for you soon!!! Hope the new patch levels out and gives you some relief

Joy, That's funny I posted and you were thinking the same thing. I hate when people use "normal" because we're all different and so are our "normals". I'm glad your BB are helping some. Maybe I could look into that as well. Imre, I don't salt load. I'm actually hesitant to do it for the high BP reasons (well prior to what I have going on right now). When it was super low, I was scared to over do it, so, I used it on food generously but never measured out the grams per day or salt tabs or anything. That would be awesome if the nervous system was trying to even itself out, yours or mine, maybe that is slightly true; I hope so!!! Lump, Sorry about your BP fluctuations. I've checked both sitting and standing and both are elevated right now. Alex, those numbers (160/115) would send me into a panic attack for sure! It is very uncomfortable. I wasn't aware of the pain and BP spike, that is interesting. And yes, I think the adrenal thing I was thinking of was the pheo. I do not salt load and am currently on no medications. A few weeks ago I was put on gabbapentin (neurotonin) and I took it three days and got really high blood pressure from it, ironically. I had woke up and felt like I couldn't even stand or see straight I was so dizzy and my chest felt funny, I thought for sure my BP was crazy low but it was the oppostie. Rama, Thanks, I know it's not dangerous levels but it feels uncomfortable and I think that is what scares me. If you see this again, can you explain to me your second sentence? What is NET? It's good to know that BP is almost meaningless in POTS but I need to tell my mind that because it gets freaked out! Thank you everyone for responding.

I normally have low BP, my highest normal for my body has ever been 110/70ish well here recently it's been really high or what I consider really high. 130/90 range. The only reason I even know it's been high is because I've felt weird/lightheaded/chest tightness and decided to check with my BP cuff, to my surprise (because I was expecting to see a really low pressure) it has been high!!! I'm really concerned of course, because it's new to me, it feels uncomfortable and I think high BP is more dangerous than low. Have you ever experienced this or is high BP your normal? I tried looking up what might be causing it. I'm super tiny, so, it's not my weight. I don't eat terribly, maybe hereditary. Not sure what else could be causing this, do you know? It said something about an adrenal issue, Anyone?

Good news! I hope things continue to improve for you. If you don't mind me asking, how long have you been on neurotonin? And, did you have side effects in the beginning or still from the meds?

Hi, I'm not sure about the cardiac enzymes and the correlation to POTs, if any. I just thought I would say hello and welcome to the forum. Sorry you are sick and have been since you were young, ick. I hope things start to improve for you soon! Good luck with everything.

I'm so sorry for what you're going through. I hope things aren't truly getting worse and that it's just a rough time for you. October was horrific for me. Not to say the past few weeks have been much better but any small improvement is welcome. I also get the head pressure that you are described and the constant feeling as though i'm going to pass out. None of my doctors have any suggestion or reasoning for me. I know that when you go to Vanderbilt they will have something to offer you!! That is the main, big deal place. I can't wait to hear how it goes, make sure you let us know. And like SeattleRain says, easier said than done, but try imagery, imagine you are well and imagine the symptoms dissipating. Try meditation and breathing. In the book I'm reading by (Dr. Bernie Siegel, you should look him up) he offers such great healing advice. Our minds are so powerful, more than you think. Listen to music because it greatly affects our bodies. Smile and laugh, a lot. Sick (cancer patients) who didn't do those things were more likely to live not as long. Hope you see some improvements soon!

Wow, that is a traumatic event. I'm sorry you were in an accident but glad that you, your mom and daughter didn't get hurt. Sorry that it sent you into a flair, I hope that it's getting better. What do they say is causing the blindness in your eye? I hope it's something that once they catch it, it resolves.

puppylove, I'm sorry. Sorry that you felt terrible when you went places. I don't have good advice about it but I just wanted to say that I experience that as well. I can be fine (or as fine as we can be you know) and then go into the grocery store and immediately feel like "seizury" head, dizzy, going to pass out, etc. I don't understand it. What does everyone mean about flourescent lights? What do they do that could make you feel symptomatic?

Abby, You are amazing for doing all that you do and not giving up and not staying in bed all day. I can relate 100%. I try so hard to work my job which most days I'm just pushing through hoping nothing terrible happens because I feel so crummy. Then you come home (job #2) and take care of kids, me too. Cook, clean, bathe, etc etc. All I want to do when all that is over is go to bed. There isn't a romantic bone in my body at that point. I'm not sure about you but I don't sleep well so when I wake up in the morning I feel like I haven't slept in days, i'm tired, i have no energy and as the day goes on it can improve a little but by nighttime i'm completely drained. Aside from physically not being in a romantic mood. My mindset is completely focused on not feeling good and trying to get better so, not to be mean, but i'm not even thinking about stuff he's thinking about. So, long story short, mine doesn't really "get it" either.

That's really rude!! I'm so sorry they treated you that way. That sounds like something my doctors would do And if it makes you feel any better, my PCP and specialists all play pinball with me too, bouncing me from one back to the other and so on. I hope you are able to find you someone new and better than that guy, he obviously doesn't care or care to help you find the issues or believe what you're saying to him. Keep us posted!

I think I can concur with you all that mornings are no good!!! First of all, I don't want to get up because I feel like I didn't sleep at all (super tired and sleepy still) or either, I really didn't sleep at all. I flip flop all night a lot, so, I'm exhausted when I wake up. I sit up and it's dizzy and tachy. I sit on the edge of the bed until I can gather my composure. Stand up and feel very out of it, lightheaded and weird.

Hi, I just wanted to say welcome and sorry you don't feel well. 1. no, I've never been tested for venous insufficiency 2. I don't have any suggestions to ask the cardiologist. mine would say 'you've had the full workup", you just need to exercise and learn to live with it. I hate that answer!!! Have you had bloodwork that tests for vitamin deficiencies and stuff? Could be making things worse. Like low b, d, iron, and magnesium. 3. I've felt this feeling!! Very scary. Sometimes, it's like my heart stops beating all together and that "drop" or realization, wakes me up and then it feels super tachy, hot, breathless, etc.

wow, you all are so kind! I like reading your encouraging and kind explanations. Sorry for the hard times that we have all had to deal with. I know we are all here and have our reasons and help others in our own ways. I am thankful for all those who have helped me along the way whether that was through driving me places, taking me to appointments, listening to me, teaching me (you guys), etc. I'm not sure if I've done my part or returned favors but I hope in time that I can. So, what do you do when someone is frustrated with you and your situation? Meaning on one hand they act like they don't mind helping you and driving you places but then act like it's an inconvenience and they can't wait for you to get better so they can do their own thing?

Thank you all for your replies. I'm sorry to those who can't or don't feel like it but do. I feel very dependent upon others and I want nothing more than to drive again (of course feel completely well too)!!! But, I feel like such an inconvenience.

Thanks guys. I've seen that one, I'll have to check it out!

Thanks guys for your response. No problem Corina, we can do a poll later. Cool about the Netherlands and riding bikes. I wish I could. I would get exercise plus get to where I need to be. My job is like 22miles from my home so, it's doable I suppose but not realistic for my situation. Thank you.

I was trying to start a poll for this, I think it's easier to see and compare that way, but for some reason I can't get it to work. My question is: Are you able to drive? yes or no If no, how long have you been unable? Have you been unable in the past and then started back up again? Thanks

cma, I don't think you're being ridiculous for being concerned about trying a certain medication. I just went through this and in fact, the medicine I was prescribed I told the doctor that I wouldn't take it because it was said to increase heart rate and i didn't need further increase. He tried me on something else that i was just as scared to try. I did it for a few days and it made me feel poorly. I'm about to give it a second shot and hope it goes well. Good luck to you!!! I've tried Cymbalta and Lexapro. No negative side effects from either but no improvement in my condition so I quit them. Keep us informed on your experience!

Cool, glad it's improved and you're feeling good and got confirmation from a doctor that you're improving!

I've gotten palpitations with and without the tachycardia a lot of times. When it's a bad episode it's very scary. It feels like my heart 'falls' or the bottom drops out.

I often post regarding illness itself and asking questions of others but I've recently been inspired by some books I've read and wanted to share. I also want to say that I don't normally enjoy reading unless it pertains to something I'm interested in such as medicine. These were hard for me to put down and I cried a lot. I read a book on hormones in one sitting, I couldn't put it down, however I don't know the name off hand but it was very informative and suggests most of us are in estrogen excess. The signs/symptoms/explanations made a lot of sense. Someone here on the forum suggested a book by Randy Smith called 'Diagnosis Unknown'. I enjoyed reading that and relating to the woman in the story and all the tests and such that she endured. I think the most inspiring and favorite so far are the books by Dr. Bernie Siegel. 'Love, Medicine, and Miricales' (I think that's the name) was really good. I am now onto his book 'A Book of Miracles'. It gives inspiration to hear that people with such worse ailments were able to heal themselves. Through medicine, positive thinking, alternative therapies, etc. I just thought I'd share because they have lifted my spirits a bit and if it can do it for even one more person, that would be great!!!! PS. If you have read some and would like to share, please, I'd love to read more like this!!!

Lyn, Issie, and Chaos, thank you so much for such detailed and informative information! I really appreciate it. ChristyD, sorry your first message messed up, I hate it when that happens. I hope your sons appointment goes well today, you'll have to let us know. I feel like someone else on the board also has an appt this morning with Dr. Afrin but I forget who. Good luck!

thanks Issie!

Forgive me for I know this gets posted frequently. What H1 and H2 combinations do you take that show improvements in your mast cell disorders? for example Benadryl and Zantac? Is this correct and is it ok to take at the same time or do you take one in the morning and one in the evening? Thanks

I've been thinking about your question you pose about what is the next step. I'm wondering what things can we try ourselves that don't necessarily involve doctors because in my case, they aren't really working with me or understanding, etc. 1. I know exercise is something I/we should prioritize and stick to to see if it helps and shows improvement. 2. A change in diet; gluten free, sugar free, caffeine free, dairy free, etc. 3. Trying the mast cell combo (H1 H2) over the counter drugs (I'd really like to try but would need someone else's information as I'm not too familiar with this) 4. Positive thinking, meditation, prayer, tai chi, qi gong, yoga. anyone else have any suggestions. Maybe without doctors help or with???