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I need a group hug


Roselover
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Help! I need a group hug! :(

Dr. G had me start on Provogil three weeks ago. I started very slowly with low doses increasing every four days or so. Nothing the first week and then suddenly, my brain "woke up". My body was still struggling, but I was THRILLED to think again!!! Then after five days like this, I hit the wall - HARD. Have been sick since last Thursday and each day is worse. Today is the worst POTS day I have ever had.

For the last two days I have been crying off and on all day long. I am grieving my losses, and I know it's right to allow myself this grief when it comes. I struggled in even admitting my weakness to you all, but I knew that God had given me this family that understands and can send me their cyber hugs. I need them right now.

Yes, I'm weaning off the Provogil and when I called Dr. G's office, Beverly said that now we won't be trying Adderall or Ritalin. But she told me to start Cymbalta, which confuses me because I thought Dr. G had said Wellbutrin would be next.

Oh - the helplessness of feeling like a trial and error drug store! "Will it work???? Will it work???? I think it's working.....BAM.... nope it flatten me instead!!!! Pick yourself up.... wait a while and try another one...." and on and on it goes! :blink:

I will pick myself up and keep going and I know you will all help me. So I thank you in advance and I praise God for giving me this group and for all the many things he has blessed me with.

Love you all,

Roselover

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Hang in there!!! I so understand the trial and error process. Please do your best to take care of yourself and give yourself a few days break between trying new meds if you need to.

Things will get better but I know it's hard to hold on to that when you are feeling so miserable in the moment.

I'm thinking of you and sending warm thoughts your way and hopes that tomorrow you will feel much better.

((((HUGS)))

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I'm so sorry you are having a bad reaction! It would be wonderful if there was just one pill that fit all, all the time, but I think we all have had a situation like you. It is a major frustration with pots. If it's not one thing its another. Big hug and prayers!

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Oh Roselover!

There you are! Thank you for posting and asking for others to share your burden. I know how much it helps me to know that others are holding me up.

As I always say...others will sing your song for you when you cannot. Can you hear me singing for you????? (out of tune, but it's there!)

I think that each med trial is as much an emotionally challenge as a physical one.

Can Provigil affect mood? Just wondering, as I have had some weird reactions to drugs in terms of mood. It could be adding fuel to your sadness?

Yes, there are times when the grief and loss seem overwhelming, and then somehow we pick ourselves up and try again. I really have to psych myself up for each trial.

This is either gonna make you laugh or make you cry...but I am fighting to get my meds approved. I've tried every med under the stars for sleep and only ambien works...but MA believes it's not necessary. So, I made list up (mind you, it only took five minutes to type!) and had a list of 46 meds that I have tried since getting sick. It was ridiculously sad and ridiculously funny all at the same time.

So, I guess I'm saying, I know how hard it is to try another med and wait and see and hope and sometimes have our hopes dashed...but sometimes not. I hope that Cymbalta will work for you. I will keep my fingers crossed that is for sure!

I am sorry you are struggling so much. I miss you here on the forum so much...and when you are quiet (like many of us), I know it is because you aren't feeling well.

I'm holding you in my heart and providing a virtual shoulder to cry on...

Emily

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Hi, Hang in there. It tooks many BB's and many months to find a BB that works for me. Wouldn't it be nice if we got paid to try out all these treatments, sometimes I feel like a guinni pig (sp?). I am now back on the Florinef, and I hope it works for me. I went to the cardio the other day and my BP had not moved, so they increased the Florinef.

I hope the next med works for you...We are all here for you though and understand exactly how you feel. :blink: I'll keep my fingers crossed that this new med works for you.

Jacquie

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Roselover

I am so very sorry that provigil ddint help you and has made you so sick.. I hope that cymbalta helps you.

I tak cymbalta.. and I do notice a difference on it.. hope that it helps you! hang in there my dear

gentle HUGS

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Cymbalta is dual action, SSRI and norepinephrine reuptake inhibitor. Wellbutrin is a norepinephrine reuptake inhibitor. So the Cymbalta functions like Wellbutrin + an SSRI. Cymbalta is a new drug, so depending on when Dr. Grubb mentioned trying Wellbutrin, it may have been before the availability of Cymbalta.

Unfortunately, finding the best treatment for a particular person with dysautonomia often takes trial and error. You may have to live through some of the "errors" in order to find help.

However, each step you take brings you closer. Just keep going.

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My sincere hugs go out to you. I know all the emotional ups and downs of med trials. You get so much hope before starting them than are so low when they don't work and then your scared to try another one...........it's a vicious cycle.

Well we are all in this together.

Hang in there

Dayna

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I'm sorry that you are feeling so bad. Hang in there and know that it will get better. This is just Par for the course and some things work and others don't but you have to stick it out and be tough :)

I know what it feels like to be the Dysautonomia Guinea Pig. That's what i should have made my Log in name :( It tough going through a zillion medications while you're waiting to feel better. I've been through around 6 different beta blockers. And I've tried at least 5 other medications that have caused me to have severe side effects, All which I hoped would be my savior from symptoms of Dysautonomia.

Let me know how you are doing & I would be more than happy to come over and visit if you would like.

Steph

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Thank you so much EVERYONE! Your hugs were so needed! I see I am not the only one taking a nose dive this week!

I still feel really crappy, but I didn't cry today - though my hubby says I look sad. But all of your warm and understanding thoughts helped a lot.

Still no answers - in fact, worse than that - more confusion from the Drs office... but I'm just gonna take it slow and not start anything new until I'm ready and I understand why I'm taking it. Anyone have luck emailing Dr. G???? Think I'm gonna try.

Love you all, and thank you so much for letting me cry on your shoulders.

~Roselover

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Guest tearose

I am joining in the group hug:

((((((((((HUG)))))))))))

I hope they figure out what meds or treatments will help you get to a better place!

Don't be sad :ph34r: just picture yourself surrounded by alll of us!

I like your slow and steady approach.

Do something nurturing for yourself tonight and tomorrow!

Maybe you can look through your favorite garden books and start planning your spring garden!

best regards, tearose

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Im strugglin' with pots too hunny and i was just diagnosed the other day. I feel like I've had my life taken away from me and I don't know what to do, what kind of treatment to follow, or what kinds of medications to take. Keep your head up and keep prayin' :ph34r:

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I am sending you one "GREAT BIGGG HUGGG" Hang in there. At least your Doctor is trying different meds. It shows that he is truly concerned about you. Hope it gets better. Vanessa :o:blink::ph34r:

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Hi Roselover, here's a big hug coming your way!

I really know how you feel: the excitement when trying something new and the disappointment (sadness) when it didn't work (or the side effects had to make you stop). I think it's something we all experience at times. That's why this place is so great: the recognizing and knowing that people understand how you feel!

I wish I could do something to cheer you up a bit, but to be true, I can't even think of something :ph34r: Well, at least I hope you feel a bit better today!!!

Corina :blink:

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Cymbalta is dual action, SSRI and norepinephrine reuptake inhibitor. Wellbutrin is a norepinephrine reuptake inhibitor. So the Cymbalta functions like Wellbutrin + an SSRI. Cymbalta is a new drug, so depending on when Dr. Grubb mentioned trying Wellbutrin, it may have been before the availability of Cymbalta.

Unfortunately, finding the best treatment for a particular person with dysautonomia often takes trial and error. You may have to live through some of the "errors" in order to find help.

However, each step you take brings you closer. Just keep going.

Does norepinephrine reuptake inhibitor mean it will help get rid of the tremory feelings? Susan

Hang in there. I had a long stretch of feeling good at one point (years) but am now am in a low point again. I'm hanging on to knowing that I was in a low point before and climbed out where life was reasonable. We all understand what everyone with this illness goes through. Nobody else gets it. Sending lots of prayers that the new med will work out well. Susan

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I'm sorry you're having a tough time Rose...I'm sending hugs and good thoughts your way.

I thought you might want to ask Dr. G about Strattera...my doctor has been discussing it with me although I have not tried it yet. Apparently it does the same sort of thing that Riddelin does BUT it is not a stimulant and works a little differently.

I hope you are feeling better soon :blink: !!

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