hilfgirl33

I agree with wishing you knew when it was going to end. Just want to add that I wish my family could know when I'm having a bad day, too. It seems like when I have a long string of doing well, it seems like they forget (more so than me) that I really have to watch not to overdo it. Like my husband is talking about taking trips to NYC and Washington D.C., both this spring, with me. He's like, just sit on a bench if you are not feeling well. Sometimes he forgets the whole dynamic of the illness. I mean, me not feeling well at home is a whole lot different than me not feeling well 300 miles from home in the middle of a crowded city....

Jackie- I'll do my best to explain what he has explained to me and what happens. I am by no means an expert but the way he explained it to me was that there are pulses all throughout the body beyond the hr pulse. He works on the body as a whole to get everything back in motion and rhythm, so things flow the way they should - you get better blood flow and motion throughout the body so things don't hurt, function the way they should, then your body is able to fight disease and work at its best capacity. For example, my tailbone used to bother me tons and he gently applies pressure, it doesn't hurt, to get it back into correct alignment... My tailbone rarely bothers me now. But the bigger picture according to the D.O. is that if the tailbone was injured and out of alignment, it is like some weight pulling down on my spinal cord all day long and could affect my neck motion and even blood flow to the brain. He says these things over years can cause real illness, and I do believe the basic philosophy of the body being in optimal working condition. Another example, he said he could help me with my endometriosis and pelvic adhesions I have from prior c-sections (which cause me a great deal of pain). He works at restoring motion in the pelvis. I didn't think he could actually help with adhesions but he says that if things are moving and flowing properly, the body could actually flush some of this away... I know it sounds crazy. I just wanted to say after all this POTS stuff happened I became way more paranoid about everything , and I was really nervous to go here but I did because I wanted to get better. Well, I'm not better 100%, but I have noticed improvement and maybe that's all I can get but I'll take it. He has also helped with chronic neck pain (I would often feel like my head weight 10,000 pounds and was too hard for my neck to carry around). I really don't have that feeling much anymore. Anyway, I'd be happy to answer any more questions. By the way, he has never hurt me, it's very relaxing actually and not manipulation, more like gentle pressure. Hope this helps. I may google this and see if I can post a link for you. Elaine

Lisa, My legs often feel what I would describe as heavy and throb when I've done too much on some days. Other days I could do tons (well for me) and not have the feeling at all. Don't know what this symptom means but it sure is annoying.

Jackie - from what I understand, craniosacral therapy is just the tip of the iceberg in comparison to cranial osteopathy. Craniosacral therapy can be performed by massage therapists who have undergone special training. Cranial osteopathy is actually only performed by D.O.'s, who have undergone more training. I don't know, craniosacral therapy may help as well, but I just wanted to let you know what I have done is cranial osteopathy.

Well my doc is out of town but I'm seeing him next Wed when he gets back. I did mention it to the receptionist and that is why she fit me in earlier. I guess if it happens again I'll go to th ER (YUK). Thank God it hasn't but I have anxiety about laying down now !! (when before laying down was the only thing that made me feel good). I don't know about the rebound anxiety. I had taken my nighttime dose about 1/2 hour before I went to bed (I usually do). Then when it happened I took another 1/2 mg. I had what I call brain chills when things were bad but never cheek numbness. One thing I thought of was about 1/2 hour before bed my DH brought home cookies from McDonalds. I have been really excellent about my sugar intake lately, but I did have half a cookie - which I haven't had pure sugar in a while. I was thinking it could be a reaction to this. I'll let you know what the cardiologist says. Thanks for your replies ! Elaine

Okay, I see Dr. Goodkin and I see/saw the man he recommends for cranial osteopathy. Has he helped me - yes I believe so. I don't know how or why, but I know when it's been a while since I've seen him my symptoms are worse (like now and I haven't seen him since November). There was one time when I had been really dizzy for like two days and I went in to see him and was worked on and I wasn't dizzy when I left. That is the only time I've had results that I saw immediately. He has also helped with neck and back pain. The thing is, he is so darn expensive and my insurance doesn't cover it, so when things are tight, unless I'm really not feeling well, I usually don't go. But I'm needing an appt. Hope this helps. I would definitely give it a try if you can swing it.

Ok, I know I have POTS but lately things have changed for me. My actual POTS symptoms aren't horrible most of the time but I've in the past several weeks (not every night) noticed weird and stronger palpitations when lying down (either side, really). I know there was a post about this before but it has become notably worse. Last night it literally felt as if my heart was jello - jiggling around in my chest and beating faster than usual. What helped was actually taking my Ativan and lying on my stomach. I am going to make an appt with the cardiologist (i've been bad about this because I've been feeling well). I looked this symptom up on google and it was always related to MVP or regurgitation. I had an echo two years ago that was negative for MVP, but I'm thinking that I should have another.... Also I think I read somewhere that you can have a sticky valve that doesn't show all the time on standard tests. Anyone know anything about this? Thanks for any help. One last thing - when my POTS symptoms were bad I was getting brain chills (numbness and pins and needles feeling in my head). I haven't had them in a while but last week I had that same sensation in my cheek). Has anyone had cheek numbness? That symptom was definitely a weird one that I hope doesn't return.

Dan, A little late here, too, but you will be in my thoughts and prayers. What a scary thing to have to deal with on top of all of our other scary symptoms. Hope they can get you some relief for this soon.!!

Yes, I get dizzy after a few deep breaths, too. The initial one usually feels good, but then I'm in trouble.

So happy that you got a doc with some knowledge who will listen. That makes all the difference in the world.

Dawn, Just wanted to say that I hope everything goes well tomorrow and the docs can help Carissa feel better. It seems so unfair to have deal with this as a child.

Count me in for rollover tachycardia and palps!!!

CONGRATULATIONS!!! That really is an awesome feat and you should be VERY proud of yourself. It gives me hope, too!!

Tim, I'm sorry to hear that you were so sick and still not feeling well. My son has the flu right now and has been running a fever over 103 for 5 days now. I am petrified to get it as he has actually coughed in my mouth (he is 4 and likes to share his germs with mom). I did have a flu shot, though, so hopefully I will get protection from that. I am not sure about the shortness of breath when lying down. I am usually relieved by lying down. You are probably just having some after effects from the flu stressing your respiratory system and you will probably feel better soon. I wouldn't hesitate to get it checked out though. Hope you are better soon. Elaine

Yes I am definitely worse with all my symptoms. I can predict when I'm ovulating by major palpitations and predict the onset of my period because of significant increase in chest pressure. I also have increased dizziness, anxiety, light-headedness and fatigue. Probably more, but I can't think right now. Oh yes, major PMS, brain fog greatly worsened, some usually mild depression. It is NOT fun.

Yes I have had times when I feel like I am on a boat - my whole world is rocking. It is very intermittent but very incapacitating and scary and ANNOYING! I'm sorry this happened to you right before your holiday. For me I think it may be hormonal at times. Hope you are feeling better!

Good for you Jessica!! It is so wonderful when we are able to function normally!! Sometimes I feel completely normal, too, for a while and it feels great.

Just wanted to wish everyone a joyous and peaceful holiday. I hope we all feel well enough to do the things we really want to do.

I have tested "equivocally" positive for antithyroid antibodies. I was supposed to be re-tested in September but have not gotten back to that doctor yet. I was told equivocally is just or borderline positive, but I have had some weird thyroid test results (high at times and then low other times), so there may be some association there for me. I really need to get that checked again, thanks for reminding me!!

Jessica, The last time I went to the cardiologist I was having a really stressful morning trying to get ready and my son was being the usual handful he is and I was having major PMS. I was starving so I ate a really quick and sugary lunch then went to my appt. When I got there, I started not feeling real well, the tachycardia was back full force, light-headed, dizzy, pains in stomach. My doc did my vitals and my resting pulse was 116 and my resting BP was 135/90 (I think). This is QUITE high for me (usually 90/60 or lower). I asked him about it and he said when you are having an actual tachycardia ATTACK, you start pumping I think it was norepinephrine which can raise your BP. Mine wasn't quite as high as yours, but I think it may be a side effect of the increased heart rate. I would definitely mention it to your cardiologist though because that is definitely pretty high. For me, once again, I believe I was triggered by the sugar. My New Year's Resolution is to get off it once and for all, just don't have the strength to do it til after Christmas, though!!! Hope you are feeling better.

Before going on the beta blocker Toprol my resting heart rate was quite often over 100. After being on my feet it would jump to the 120's to 130's quite easily. Very low dose Toprol (12.5) twice a day has helped me with this. Hope you are feeling better soon.

Michelle, Thanks for that article. Nina e-mailed what I needed to open and view it. I found it very interesting (if not just a tad over my head at times -lol), but the conclusion of the MSNA (muscle activity) being markedly increased during this time makes me wonder if the muscle twitches I see a marked increase in during this time are caused by this, and maybe even palpitations?? Very interesting. What were you thoughts on the article and do you have any problems with your cycle? I could also be starting perimenopause, so not all of the problems I have could be linked to POTS - but I think they are definitely worsened by it. Thanks again

Michelle - I guess I don't have acrobat reader. I used to but we had the whole computer cleaned out when it got a really nasty virus. If you could email me, I would really appreciate it. Thanks. Email: Hilfgirl33@netscape.net. Thanks so much !

Thanks for the info again Nina!! If tomorrow does not find me better, I will probably give him a call. Here's to us all being healthy for the holidays!!

I had my flu shot yesterday. I have been milking a cold/sinus thing but had been feeling pretty well for the past few days. Well today I feel like I am getting sick all over again. Do you think this could be a side effect of teh flu shot. I feel somewhat tired, stuffy nose, somewhat itchy (eyes and throat). I've had a cold for a month now and I hope I'm not getting another one on top of it. Also, about 20 minutes to 1 hour after I had the shot I felt kind of weird - light sensitive, shaky, cold, but it did pass. Do you think that could've been a reaction. My actual POTS seems not to be too affected by all this, so that is good news anyway!