RockiesGirl

I am sooooo lucky/blessed to be able to work from home!! I was diagnosed in January but I had Cervical/Uterine Cancer 3&1/2 years prior to that. It has been a long road, but I am happy to finally have somewhat of a diagnosis. For me, as I hope it is for you too....the symptoms seem to come & go. Some months are awful and some months ok. All I can say is hang in there Also, I have a great support system in my boyfriend and friends. Sometimes I get down too and my friends aren't always there with a shoulder. So far, I have been able to handle it w/o talking with anyone like a counselor, but I really think it is a good idea. Take care and keep writing etc. It is a good stress reliever.

Hi Tinks; This week I have been doing fairly well. Sunday and Monday were my Yucky days Felt like passing out a lot. Pretty much did once.... Then I have felt better. I do not understand it.... But I really did a lot the few days before and pushed myself, so maybe that is why. I have been soooo hungry and actually craving salt like crazy. I go upstairs, pour some out of the shaker and lick my palm. I am sorry your BP is all over the place...wish I could send you a magic fix it. Take care!!

Gained about 10 lbs. since being put on the Beta Blockers.

I have had the allergy testing done and it was very non-invasive. It was extremely itchy. They have emergency protocol on board if something major happens. For me, it was very eye opening. I do not have celiac disease but am highly allergic to wheat. Hence, no more wheat for me & unfortunately it is in everything . What's interesting is that I am highly allergic to all Grasses so I guess it makes sense that I am allergic to wheat as well. Anyway, since I am ingesting something that both my blood and my skin pric test show I am allergic to....therein lies the problem. I am also allergic to several other things (hay fever) & am lactose intolerant. I've known about the lactose thing for years... Beef was another one, which I also gave up years ago. Maybe because the animals ingest grass??? Just reaching here, but I find it interesting. Needless to say, it has helped me quite a bit to illiminate the foods I am allergic to and at least my stomach symptoms have greatly improved. If I cheat, the big D returns... Don't know about the EDS issue...

Be very careful of YAZ....I know 2 people personally who have suffered small strokes/hemorrages in their brain/eyes when they were on this drug for birth control. They were otherwise healthy women with no other issues. The Docs immediately took them off the Med and instructed them not to take it ever again. JUST FYI....

I'm interested in this answer too!! Please!!

What a wonderful, beautiful Post!!! Thanks soooo very much for sharing!!! Very much appreciated!!!

YAY!!! So happy to hear it!! Take care, Michelle

I think there is definately a 'link' here. I've written about this before, but here goes again. When I was 35 (I'm 39 now) I developed a low grade fever 99.8-102.3 that lasted over a period of 7 mos. I attributed it to many minor surgeries because I had cervical/uterine cancer.... they kept testing (biopsy, deep biopsy, Leep etc.) and it had spread into my uterus. Anyway I felt awful and my OB/Gyn said it wasn't the cervical issues causing my fever & sent me to GP. After several tests...they couldn't figure it out. Finally had a hysterectomy. After 6-7 weeks ended up in the hospital with a temp. over 103, hospitalized for 8 days with an Abcess, which required massive quantaties of antibiotics. Now I know that our bodies have a hard time regulating temperature but I still get a fever of up to 101.2 some days. I have told my Docs about this and they shrug it off?? But it makes me feel just awful enough BUT strangely enough the last 4 day hospital visit 6 mos ago, when I felt my absolute worst (besides the abcess) my temp. was way below normal 94.6??? I started to feel better as my temp rose and when I left the hospital it was 99.8?? Might also want to add that they have tested my Immunoglobulins & they are all over the board?? I don't pretend to understand this Just wish the Docs would focus a little more on this.

Hi there London and Welcome!! Love your 'signature' line. I have the same problem with Chest Pain but sometimes it is really prevalant in my neck; not so much in my arm or jaw, but I get it there too. My cardiologist says it has something to do with blood pooling?? But I sympathize because sometimes it hurts sooooo bad it brings tears to my eyes, other times it is just annoying. Can I be an idiot and ask what IST refers to? I assume Inapropriate Sinus Tachycardia, but want to be sure?? Regarding the sex issue...I am not on Midodrine but it seems that my sex drive comes and goes with my BP & HR. It seems sometimes it is in overdrive and other times in is non-existent; if that makes sense?? Take care

That's GREAT!!! I too could not work unless it was from home, which I am blessed to be able to do Congrats!!!

I can feel your pain/frustration reverberating through your typed words. It always seems like hurry up and wait with the doctors... I'm sure that they have been present in the room when these cardiac episodes have been happening?? Last time I was in the Hospital that was the only way they figured everything out. I sat up and my HR went way up... Just a thought. Also, every time they do any kind of testing or I have an emergency/hospital stay I lose A LOT of hair too. After they get her stabilized, PM me if you want, & will share a vitamin product that is all natural and has started to help with re-growth. There are a lot of people pulling for you and Kayleigh (I might be spelling her name wrong, if so sorry), me included ;o) AND it sounds like you are ALL doing as the Doctors prescribe....I know it's an excruciatingly slow process but hang in there. Someday you will look back on all of this and hopefully the docs will have it all figured out by then ;o) Also, maybe this is a learning process for you, Kayleigh and the Docs... Bless you all and try to hang in there!!

Yay!!! I'm sooooo relieved, as I'm sure you are too. Keep us posted!

I do not know about all of this but after my Dysautonimic testing (they do not have the best facilities here in CO) the dysautonomic doctor told me I have Adrenergic Autonomic Polyneuropathy and Cholinergic Autonomic Neuropathy. My BP started out at 98/70 HR of 69 and after several minutes on the TTT it was 170/98 with a HR in the 160's. During the course of TTT, at the end my BP went as high as 188/132 with a lower HR of around 118ish, at which time I thought my eyes were going to pop out of my head and I actually broke a few blood vessels in my eye. So, she said I have the High Heart Rate of POTS but this other diagnosis as well Don't understand it, but I have noticed that every time I go have tests done, it puts soooo much strain on my body my symptoms get worse. Or it might be because of the unbelievable amount of stress I'm under

I know that any food or drink definately affects the blood testing results. One time, I forgot too, drank some coffee with Vanilla creamer and they wouldn't draw my blood. I totally understand about the whole driving thing etc.

Our thoughts, prayers are with you and I hope everything gets better. Poor girl, makes me wanna call somebody too Keep us in the loop and if you lose your cool, we ALL understand on here. (((HUGS))) to you, your daughter and your family!!!

I replied infrequent migraines with no paralysis, BUT before I started on the Bystolic (Beta-Blocker) I had probably 3-6 migraines a week depending on a lot of variables. Some weeks I would be fine, others it seemed like I was experiencing constant migraines. After starting the Meds the frequency of the Migraines has lessoned substantially; not sure why but I am happy about it.

Stress is a HUGE factor for me; even activities that I'm sure others would consider mild in nature. After a few minutes the tremors start in. Sometimes I can have a glass of red wine and they will lesson but sometimes no matter what I do they continue. They are quite embarrassing and I think even that adds to my stress. I have learned though, if I do not try to calm down they start all over my body but only if I am standing. If I sit or lay down it is alleviated somewhat.

First of all, I am so sorry that you are going through this w/o the support of your hubby. Maybe give him some of the brochures off this site to educate him. Maybe then he will better understand. On another note, if you are exercising 30 min/day and not seeing any results, could your POTS be caused by something else? Have you always been heavy? Or did it come on a little suddenly? Before you had symptoms could you get the weight off a little more easily? Have you had your thyroid tested? Just some thoughts? I have put on a little weight as well right after I started on the Beta-Blockers and I hated it, but with time I have learned that being able to go out on occasion and living a more normal life is worth the weight gain Love yourself for who you are and others will love you too. Take care and write if you would like ;o)

Good call ;o) I find that I have some of these while on the Bystolic, but they are way worse when I am off. I can't stay upright or not faint when I am off the Meds. My doc tried Toprol 1st but I was soooooo cold and blue, tired beyond belief and not to mention hair loss. Bystolic has been much better. With that said, every medication works differently on every individual. Hope you can find something that works for you or the Bystolic works itself out

I too am on Bystolic. I had one night where my BP was 158/136 and HR was in the 150's. It took a little bit for HR and BP to settle down. I mean by a little bit, 30-45 days so maybe that is it?? Hopefully ;o) Also, I had alot of chest pain in the 1st & 2nd month too. It eased as time went on as well. But I am on 5mg. and now it has been 3.5-4 months. If it persists, I would check with your doctor.

Well at least it was hopefully good to get a confirmation diagnosis. I was trying to see your old Posts to verify if this was a 'good' thing or not. Obviously, it is not a 'good' thing, but for some of us, we have been waiting for so long to get a diagnosis or told we are whacky; it feels so good to finally have a diagnosis ;o) At least maybe the Meds will help somewhat and you can learn what helps for you on a day-to-day basis!! Take care and all my best to you

I can do my 1 cup of coffee in the morning but that is usually all. All soda is out as it increases my Tachycardia....although sometimes I sneak a bit when I am at the movies. I pay for it during the movie But it kinda adds to the excitement!! LOL My heart does flip-flops as well and it is worsened by Soda mostly ;o) Hope this helps!!

Just wanted to say Welcome and glad you found us!! Too tired now to type more but I will try to re-visit

I feel it too Sometimes I just want someone to listen, to talk to, to be a shoulder, but to others it seems like 'old' news. They don't seem to understand that I do not want to go out because I do not have the energy. If I do go out, sometimes it takes days to feel like my old crappy self (to quote someone else on this site). It's always like, we won't do much... Not doing much for others is sometimes like doing a heck of a lot for me. When I was at my worst, even the thought of chewing gum exerted too much energy. So, my girlfriend thought she would be nice this weekend and bring the party to me.....but she didn't bring hardly any food I could eat and left my house a mess. She invited people I hardly know & I was embarrassed by my shaking. I know she was trying to be nice, but..... Suffice it to say, I am having troubles with friendships too I am soooo Thankful for the people I have found on this site At least I can type, read and listen to others who seem to be going through what I am.