Welcome to the forum Aj201128 although I'm sorry to read what you've been going through. It sounds very tough.

If you're still concerned do go back to your GP and if you have more than one at your surgery, maybe you could see a different doctor for a second opinion? We have some information on this just here.

If you'd like to talk things through with one of our nurses then you're welcome to give them a call as well on 0808 800 4040. Their phone lines are open Monday - Friday between 9a.m - 5p.m.

I hope you're able to get to the bottom of this soon Aj201128.

Kind regards,

Steph, Cancer Chat Moderator

Hi, I have just discovered this forum and have the same symptoms as AJ above. My blood pressure went to 202 and the GP put me on amlodipine. This has not controlled my blood pressure very much. I have spoken to the doctor about this and told no, it is too rare to consider.

I'm very scared and don't know what to do next, the go has increased the amlodipine and said do another blood pressure reading in two weeks. I have been like this for 9 weeks already, very frightening to be like this. 

Thank you

Reva

Hello

This is my first post to the forum.  Pheochromocytoma is a word I only learned on Thursday when my doctor said it was something he wanted to investigate in relation to my symptoms.

I have been having these episodes intermittently for the last 18 months.  Usually put down to vestibular migraine.  (I have had migraines for years together with weird balance and numbness symptoms.  So I have had 5 brain MRI's over the last 14 years none of which have shown anything.) Without warning in my sleep I will suddenly wake up with body and head in absolute crisis, head spinning, feeling like it's the end of the world.  Crawl to the loo and once that bit is over crawl back into bed and then spend the next 24 hours recovering.  I feel absolutely destroyed after an attack.

It's great to finally find people who recognise these symptoms although I am so sorry you are having them too.  You are exactly right - it is awful not knowing when the next one is going to come.  Maybe you could see another gp at your surgery?  Take care.
 

Hi Dolyfan, thanks for your reply. I have only recently developed these symptoms. 

I have spoken to 2 doctors and they say it's anxiety. 

I find it difficult to explain the symptoms so it's classed as a panic attack. 

Every day for 2 months now.  I concerned as there is a family history of this condition, but the doctor says it's too rare.

I may have to see a private consultant and take it from there.

Thanks again, hope you are able to get sorted out.

Reva

Sounds like a good idea especially if you have a family history of the condition.  There is a YouTube video by someone called Kirsty who had symptoms everyday if you look on Pheo Para Project on YouTube.  Good luck.

Hi Dollyfan 

I will do, thanks for the information.

Reva

Hi Dollyfan, I saw a cardiologist privately today. He is the only professional who hasn't said this is anxiety. I having ECG monitor and Blood pressure monitor as my BP is still high even on medication 

He thinks there maybe something related to the adrenal gland, to get any scans I will need to pay privately. That's probably the best idea to get some answers to this terrible illness.

Hope you get on with your investigation.

Thanks

Reva

Hi Reva

i am glad you have found a doc who is listening and getting things moving for you.  I hope you can get to some answers soon.

I am waiting for the results of blood test and 24 hr urine collection.  My follow up is not until the end of March and I am finding waiting and wondering quite hard!

all the best

Thanks Dollyfan, hope you get the answers you need. Can I ask what are the names of the tests so I can follow up when I next see the cardiologist?

Take care

Reva

Hi Reva

sorry for the delay, the tests on my form say this

Serum Metadrenalines

24 hour collection for urinary catecholamines

24 hour collection for and 5-HIAA

My assumption is the first is the blood one and second and third are urine since that's what I did for 24 hrs.  The last one doesn't seem to make sense but that's what it says!

good luck with it all

DF