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babybhelles

RCVS Diagnosis - Need Support

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Hi Everyone,

I had a series of minor strokes on October 3. After lots of time in the hospital they finally did an angiogram and found vasoconstrictions. After other tests they determined I had RCVS. It's rare and I really need some input from someone else who has it.

It's been two months now and the biggest problem I have is fear, as well as not feeling normal and wondering if I ever will. I have deficits in my right arm and leg and my left hand that constantly remind me of what happened and scare me about what might happen. Any little headache or weird feeling in my head makes me scared, and the past couple of days my vision has been weird, so I'm afraid of what might happen.

This was brought on my birth control pills (which I took to prevent endometriosis pain), pseudoephedrine allergy pills and a boatload of stress from family visits when I was too busy at work and school over the summer/fall. I have been off the birth control since the stroke, have totally changed my eating habits so I get tons of vegetables every day and I'm riding my exercise bike at least 30 minutes per day. I'm trying to lose weight and it's coming off slowly.

My husband tells me I'm fine, the doctors say I'm fine, but I don't feel fine. I get exhausted just taking a shower or any time I have to stand in one place, because both legs shake like crazy. I'm really tired all the time, but it's not a sleepy tired, more like exhaustion. I can't even have a conversation in person or on the phone without feeling exhausted afterward. I no longer drive because I'm scared and I don't go out in public if I can avoid it because I don't want to get stuck in a line or something while I'm so tired.

I have a follow-up MRI scheduled just before Christmas so they can tell me what things look like in there. Until then, my imagination is running away with me. I know you're not supposed to let fear control your life but I need to know how to make that happen.

Anyway thanks for reading and any advice will help. Thank you.

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Hi BB,

Sorry to hear about how you are feeling all I can tell you about is my SAH and to tell you. You are not alone in this.

I was told I would never walk again now I walk approx. 100 yards !!! to some it's nothing but to me it's a milestone.

My husband was also told I should go in a home by Physio's. (I never did as I was told by them when out of it). A year later and hydrocephalus under control I started the long journey to some kind of normality.

I came home and it's taken hard work and No Stress !! remember BB No Stress whatsoever.

So all I can say is keep singing and smiling as it is a long haul but we will get there, keep onwards and upwards.

Welcome to BTG, this site has helped me no end.

Early days for you but keep fluid intake up and Good Luck

WinB143 xx

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Thank you so much for your answer. I received it by email when I was riding in the car with my husband and I couldn't even read it aloud because I was bawling my head off.

I just really, really need the support.

I managed to get out and take a WalMart shopping trip and it felt good to do something sort of normal, even though it made me very tired.

Staying positive is so hard when I feel a little weird thing and my imagination goes crazy.

Thank you and any more advice you could suggest would be so much appreciated. I know it's still early in my recovery.

:)

Edited by penny
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Hi,

I actually had to look up RCVS as I did not understand. It is difficult to accept you have had any type of injury to the brain. I had a SAH in Apr and the site of my bleed was never found.

It is difficult. I may look the same but I am not. No matter the injury we all deal with fear after the dust settles and we have time to think. Fear is fear and if you let it, it will be happy to control your world.

I know because I let it for 5-6 months after the SAH. I am beginning my 8th month and I am finally coming to terms with so much and realizing that I must live to live. I hope that makes sense.

The first three months after I came home I would not even buy myself a pair of shoes because I thought I was going to die. It takes time to ingest all you have gone through.

You are not alone.

Iola

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BB,

Make sure you go out every day with loved ones, it gets on their nerves but it keeps you happy and at the moment

you need all the love and laughter you can get.

Keep happy and smile every morning you wake up.

We are here yeahhhh xx

Love

WinB143 xx

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Hi there & welcome glad you found us.

I was told (ok not me my husband) that I'd be 80% disabled & 20% able took that & turned it right around & more.

Its horrible with the imagination runs riot I think we've all been there & to say try let it not to sounds daft but really do try hun.

It is difficult but try to focus on the good things.

take care

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Bless you. What a time you are having.

I think fear makes everything worse and amplifies every sniff, tweak , ouch that we get. I am reading at the moment about secondary suffering and it's very relevant to me that sometimes the fear of the unknown,more in our cases , sometimes the known, can really make too much noise.

Simple advice that is on this site again and again is to smile if you can, spend time with loved ones, be kind to yourself and others, sing, laugh.

Louise is so right. One simple thing that helps me is to write down everyday what I am grateful and happy for in my life and what I noticed that was lovely. Look for the good and emphasise it. Get yourself a cute little book and start noticing the positives if you can. It helps me. I hope it helps you. Take care. Wish you luck.

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Thank you Iola!

That's how I felt at first, like I was going to die, and I still have those fears whenever something is the slightest bit off.

I've only been on this site for a day and already you are helping. I went on a WalMart trip yesterday and I went to the grocery store today, trying to do normal things.

Thank you so much for helping me - continue to take care of yourself.

Edited by Karen
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Win,

I'm trying to work on that - getting out into the real world to try to do some normal things.

What you said about stress before - how do you avoid it? I still work and have deadlines, so sometimes I feel the pressure there.

People used to vent to me and now I just can't take it. Right now I have a terrible headache because a friend vented on the phone about problems at work at my old job. I had to lay down and take a nap afterward! I've been pushing people away for the most part because I can't handle it, but this woman works for me as well and I wanted to be a friend.

I try deep breathing but that doesn't seem to calm me.

Edited by Karen
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Thank you, Louise!

I guess sometimes it's better to be told that by someone who has been through it. My husband can talk until he's blue in the face sometimes and it doesn't help because he's always been very healthy.

Edited by Karen
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Daffodil

That's a great idea about the book. I enjoy writing and maybe I can turn it into part of the healing process.

Thank you so much!!

Edited by penny
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Thank you to all who replied!!!

This is a great site that is already helping me after only one day.

I'm going to go get on my exercise bike now and get some more positive thoughts into my head. Today we got some prices on a gym membership in town. I'm thinking about it.

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BB,

I told my sister who tells me all her troubles that when I went to see surgeon he said " You must not stress and

remain calm at all times "

It was a white lie without hurting her feelings but now she is killing me with kindness lol. He did say No stress though.

Right I am away overnight in Hotel first time away since the SAH then onto my Sister Sylvia who still looks on me as

the baby of the family. We are all OAP's lol but she thinks I am very brave and she saw me when I was really ill.

She goes "Win I am so so proud of you, you have proved them all wrong" She gives me heart. xx Every SAHer

needs a Sylvia in their lives.

You keep well BB and have a wonderful weekend and I'll be back Saturday to pester you xx

Keep Well and smile today

Love

WinB143 xx

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Win

That sounds like something I need to tell my sister! I am dreading next summer when they all want to visit (her and my parents). Both times I had stroke symptoms (one was never officially diagnosed as a stroke - they thought it was my migraines acting weird) one of my parents was visiting. I had to work but they wouldn't give me time to work. They just want to chat away all day. I love my family but I can't take the stress anymore. My husband and kids, on the other hand, have been wonderful.

Enjoy that hotel! That sounds like a lot of fun and you deserve the break!! :)

Edited by penny
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BB

I hope you have been well and no stress.

I had a good time and was so proud as I walked in Restaurant and rested on a chair while telling waitress

"Hospital said I wouldn't walk again" she replied "proved them wrong didn't you"

Had a good time with hubby, first time out properly.

I hope you are keeping well.

Take care and smile

Love

WinB143 xx

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Win -

Thanks for sticking with me! I have had some good days and some not so good. I have my follow-up MRI coming up next Monday, and as it gets closer I am getting more nervous. I'm hoping and expecting some good news, although still struggling with fear of not-so-good news.

Today's a good day. The weather has improved a bit, so I was able to get out and take a walk in the fresh air. That was helpful. Yesterday I had an awful headache and didn't spend any time outdoors. There is probably a correlation!

Anyway, so glad to hear that you were able to get out to the restaurant and enjoy time with your husband. Keep on smiling - I know you will!

-BB

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Oh, the weather affects me terrible. I was pretty good yesterday and then at night nasty weather moved in and the dizziness woke me up. I kept dreaming I was falling. Took most of the day to shake it. Good luck with the MRI.

Win, bravo!! What an accomplishment. Smile. I am. :)

I

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BB,

Its been nearly a year how are you ? Keeping well I hope xx and smiling?

Be Well BB xx

xx xx Thanks "I" a year nearly to reply ha ha xxx

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