hippychic258

Maybe ask about lowering the dose of florinef, Is the florinef helping in any way?

No Im not on any meds.

No Its not my sugar that is fine not hypoglycemic or diabetic. I thought maybe adrenaline surge but can you have an adrenaline surge with no tachycardia?

My head feels like after you have been to a concert and you rears are ringing and buzzing and also the feeling you get when you have drank way to much and you lay down and your head feels full ears ringing and dizziness, anyone else ever feel like this and what relieves it? What is it? Thanks

So i have read a lot of people get rid of dizziness when taking florinef, is it because it raises your blood pressure? because my dizziness doesn't seem to be from low blood pressure. And any other symptoms that it has helped? Thanks

Usually its 2 to 3 liters day.

Anyone know what could cause a feeling like your sugar drops or is low but your glucose reading is normal? A weak shaky feeling but no actual shaking? Glucose, BP, Hr is all normal, I have been getting this a lot the last few days. Thanks

Diamond,,, I to have such delayed reactions to exercise also, before I had this flare I would exercise in the morning and be fine until late afternoon or evening then I would be so sick, I tried to explain this to several doctors and they said there was noway that was possible and it couldn't be from the exercising. It didn't happen when I didn't exercise and I knew it was form that. Any ideas what causes that??t

I am happy for you that you have gotten some answers that is very encouraging!! What is the name of your Doctor?

Well I have a friend who has Fibro and let me tell you it is very very real and let a doctor get fibro, cfs, or pots and I am sure they will look at it much differently.

Thanks everyone. What do the steroids help with? Do they get rid of neuro symptoms? Which one were you given? Thanks

If it is in the genes is there anything that can fix it?

Leydengs: How long were you in a wheelchair for and could you not walk because of tachycardia, and what symptoms did you experience? It makes me sick to stand and I get lots of neuro symptoms.

I have never heard of it. What is the difference and why are you changing meds?

Lyme keeps coming up, I met a girl in hear when i first got sick we emailed each other because she lives close to me, anyways she was diagnosed with Pots at Cleveland clinic she was sick for 16 months and was not getting better so she went to see a LLMD and she has Lyme put on antibiotics got sicker for a couple weeks (which is a normal reaction to the meds) now is doing so much better. When she was at Cleve Clinic she mentioned to them to check for Lyme they blew her off and said it wasn't Lyme, funny both Docs there told me the same thing. Anyways I do get shakes and tremors mostly just on the inside not visible.

I applied in June I hope I have the same luck, I haven't heard anything yet. Is it the same in every state? Its bitter sweet to get approved.

Glad it is working for you that is very encouraging! Do you have any tremors, head pressure or shaking on the inside feelings that it may of helped?

Sounds like he is having a tough time, I am so sorry I know how hard it is for me to handle I couldn't imagine if one of my kids had to go through it. I would say if the amino acid supplement works stay with it Doctors don't have all the answers and if it works that is awesome. What do you mean by rollling? Hugs to him!

Thanks for all the comments and support! I am totally bedridden right now just able to walk 6 steps to go to the bathroom. I am so sensitive I can't have a conversation for longer than 10 minutes so most of the suggestions are impossible right now, but they are great ideas and hopefully one day I will be able to do them. I do make jewelry I have made it for years and sold it in the salon and a boutique here in town and have done quite well. I also started an Etsy store online in April. So when I am able I work on that but some days am not able to even do that. I am going to do a saliva test to check all my hormone levels, I have 90% of all the adrenal fatigue symptoms low cortisol and some low aldosterone symptoms as well, when I got this flare I was in major stress for about 7 months so its possible. I can't stand for long ( like 1 minute ) without vibrating sensations in my body and head, weird huh?

High altitude has always made me worse.

I have had several 24 hour urine tests also to check for pheo, but was it came back normal, but I have also heard many people who have had there 24 hr urine test come back normal but later found out they had the tumor. I am going online and ordering saliva testing for all my hormones its more acurate.

As I look back at the past 8 months of my life since getting this flare I realize how much life I have missed out on and how much this illness has taken away. I am sure all of us have missed and lost so much of life , and it just seems so unfair but I am still hoping that this has all happened for a reason and there will be better days ahead we have to keep believing this right? It is very hard for me right now, I had a life long dream since 7th grade ( I know we all have had dreams) to own a salon and at age 38 I did it and I loved it, it was more like a hobby than a job for the past 8 years I was living my dream. Well since I have been sick I can no longer run a business so I have to sell it I received an offer today and the reality has just hit me really hard, yes that dream is soon to be gone. I am grateful that I a ;east was able to enjoy it for 8 years. This illness is so hard and I feel for every single person who has to live with this, I am sorry for everyone who has lost a part of there self and there life because of this. I am so thankful for this forum for the support, information and advice! Just having a rough time with all this right now and just needed to vent a little. I am trying to keep faith and hope, God has to have something better for all of us don't you think, I try to believe this is a bump in the road to make me a better person and hopefully one day have a better life ahead. I pray for everyone every night to get relief for this illness!! Pam

Naomi: Every symptom you have mentioned I have had the last 7 months and then some. They have really kept me down more than the "Tachycardia". Like you I feel like I have something else wrong like a virus lurking, who knows and I feel like doctors are not going to be able to figure it out. I have days where I feel better than others. I hope this passes quickly for you and you have some better days Are you on any meds? and how long have you been sick? Sue: I feel the same way as you described. I see you have been sick since 2006 and still have these symptoms, that is what makes me think Lyme, west nile and any other weird virus could be affecting these symptoms.

Bren- Another new symptom for you? ugh I feel for you!!!

I have been thinking the same thing for 7 months every single day I fee like I am dying! Strange symptoms and sensations, I feel wired at times, head buzzing ears ringing, then other times I am so exhausted i can barely move. I feel like I have something else wrong with me like something is eating away at my nervous system. I hate waking up each day wondering what new adventure my body is going to take me on. Also I dont trust my body I can feel pretty good for a bit then wham mega symptoms. My worst symptoms right now are back neck and joint pain, extreme eye sensitivity gives me tremors, noise sensitivity, over stimulated by any conversation, I can't show any emotion it makes me sick. So yes I do feel like I am dying quit a bit. I am getting checked by a lyme specialist but not till Nov. Naomi: Sorry you are going through this I totally know how you feel it is horrible, how long have you been sick? Are you bedridden at all? I will pray for you to get some relief. What symptoms are you having?