Dear Friends,

I don't know if I'm posting in the right place but . My fiance (41 yr healthy male) has been experiencing EXCRUCIATING BRAIN PAINS that feel like an ICE PICK STABBING his head. He's had this for years but this year has gotten worse and the past few days have been UNBEARABLE.

His aunt had MM and 3 strokes before the age of 43 (she was only diagnosed after an angiogram), plus a grandmother who died of a stroke at 41. We had a doc look at him and diagnosed him with "cluster headaches" but then gave him and MRI and said he didn't see anything wrong or know what it was. He didn't do any further testing, just keeps prescribing drugs that don't help!

This week the pain is unbearable. He is a strong man (former marine) who can tolerate alot of pain but these attacks are awful. He almost drove off the road the other day with me and my daughter in the car. We were out and he started to fall over and I grabbed him and could feel him shaking.

I have been researching like crazy and he has many of the symptoms of either MM or Unruptured Anyeurism:


Does this sound familiar? Can anyone offer any help/advice? He's been to the ER before only to be told he's ok. But, it's getting much worse and we don't know what to do. This week is so bad that he's had this impending sense of doom and feels like his head is going to "blow".

Yesterday he gave out my contact info at work in case something happens.

I feel like we are just WAITING FOR THE WORST!

I am scared to death that something awful will happen if we do not get to the right doctor who can diagnose and treat him.

I've tried to reach Dr. Ogilvy who is here in Boston at MGH. I'm waiting to hear back. We don't have 3 mos to wait to see someone, we both know it. The last doc was a 3 mo wait - for nothing.

I'm really scared. Can anyone help?

Thank you,

cubbie wrote on Feb 3^rd, 2010 at 11:51am:


Hi Kevin,

Thank you so much for responding. I feel all alone with this as if his life is in my hands. The doc we saw really didn't seem to care, didn't even schedule a follow up. Prescribed Gabepentin - same med I had for a back injury. Then he moved onto anti-depressants! I don't think he's ever heard of MM either.

Questions - I'm not familiar with all your lingo. Are you suggesting he needs an MRI? I think that's the test we already had and didnt see anything abnormal (they used a dye). However, an MRI didn't show anything for his aunt either. Only a cerebral angiogram showed the MM. SPECT is a test or type of doc? The doc was saw was director of a Lahey stroke ctr.

And are you suggesting we go to the ER? We've gone in the past with no luck, but the symptoms and severity is now markedly worse. I've contemplated checking into the ER at MGH where Dr. Ogilvy is in hopes of being seen by him or another knowledgeable doc, but have no idea if that's possible.

Thanks Kevin,
Jules

Welcome to the family.

A "SPECT" is a test that shows how much blood is flowing in the brain. It can show areas of weekness. Most of us have a SPECT scan to detrmin what knind of surgery is nessacary to help increase the blood flow. I sugest contacting Dr. Scott. He is the premier Moyamoya specialist on the east coast.  Located at Boston Children's Hospital, he specializes in the pediatric treatment of Moyamoya and the EDAS surgery.  Dr. Scott does, however, also treat adults.

Here is his info:
http://www.boston-neurosurg.org/faculty/scott.html

Explain everthing you have to us and He if he can't personaly help then he will know some one who will!

Please keep us posted.
Stay strong,
Becky

OOOPS just saw that Becky posted a link already..Thanks Becky
Mary Grace

Julie, Your fiance is very lucky to have you as his health advocate. Your doing a great job, keep up the good work. You will get to the bottom of this. Many prayers for you both. Dr, Scott is not only an Dr. but a wonderful caring person. He was my daughter's surgeon and his whole team was amazing.
Mary Grace

That's great.....I'm so glad he could point you in the right direction.....Keeping those prayers coming.
Mary Grace

Hang in there Jules. I remember the 'black hole' of uncertainty you're experiencing only too well.

Great advice above. All I can really add is to be prepared with copies of the MRI (on CD) that Will has already had. If you're close to these doctors suggested above, take copies to them.

Did you ever mention moyamoya to his existing doctor? What did he say?

Stay strong, your doing good.
Mark (Luca's Dad)

That's great news!!! I'm so glad you got an appointment so quick. MM or not hopefully this Doc will help you get to the bottom of this. I can't say for sure but I think there are many who have had a "normal" MRI read by a dr. but have later been diagnosed with MM by a specialist. Many prayers! And again your fiance is lucky to ahve you advocating keep up the good work!
Mary Grace

I am happy to hear you and Will are finally seeing a specialest. You are not hypochondriacs!! It is not normal for anyone to be in pain so you are just pushing to find out why.

Who said no Achohol? My neuologest said i should continue to have my ocasional drink, and red wine is the best. He strongly warned me aginet binge drinking but if I wanted to have a glass (only one!) everynight I could. He siad is it a blood thinner and since my body is used to having it normally then I should continue. I also take 81mg of Asprin a day, like many others for blood thinning.

I would write all your questions down so when you see Dr.Day you are not trying to remember. Expesally about the achohol thing.

Good luck, I will pray for "happy" results or answers.
Becky

JulesBoston wrote on Feb 4^th, 2010 at 9:45am:

Hi Julie, Welcome to our MM family!

I have no idea whether Will has MMD or not, but I can say that we have heard of many MM cases in the past where the MRI came back normal and they did in fact have MMD, especially if the radiologist and doctors involved were not familiar with MMD, as we see so often. The definitive test to diagnose MMD is the "angiogram". Will certainly has many of the symptoms of MM, so with his family’s history, it’s certainly worth being tested for it, IMO. The angio will definitely say one way or another. The angio will actually show the MM vessels.

MM will not show up on a SPECT, meaning it is not a diagnostic test for MM, but rather a scan to test and measure the oxygen content of his brain.

What concerns me is the amount of wine that you say Will has to consume to help with his headaches. Although I certainly do understand you will do absolutely anything to help alleviate the pain of a cluster headache, but I’m looking at the amount of alcohol consumed by someone who may have MMD; it’s very dangerous and risky. See, with a MM patient, they do not get the proper blood, oxygen and nutrients to the brain as it is, hence the TIA’s, headaches, strokes, etc, and alcohol is a diuretic and can cause dehydration, and dehydration is a danger for every MM patient . Alcohol dehydrates brains cells which increases the chance of a stroke. All MM patients without treatment/surgery, even if you are hydrated, are at risk for a debilitating stroke as it is, so heavy amounts of alcohol is so dangerous and soooo risky--a stroke waiting to happen. Even after successful surgery, they say moderation with alcohol is the key for a MM patient.

Also, incase you didn’t know, hopefully this may be of some help… DJ the moderator and founder of this website suffered from cluster headaches as well before his surgeries. He founded and runs a large support and information website for cluster headaches: http://www.clusterheadaches.com/ They too may be of some help to Will.

My thoughts and prayers are with you.

Mar

Not to mention that he was taking so much ibuprofen (before he started the wine) that he eventually started throwing up blood and perforated his stomach lining and now has to take an antacid everyday.

What would this man do without me?! 

Jules,
WOW a whole bottel! Mar is right about the dehydrating part. I am sorry I didn't mention it in my previous post. He could be creating or intensifying his headachs with all of that drinking and self medicating.

I would call and ask Dr.Day what he might do for this weekend to help his headachs before you see him.

Will is a lucky man to have someone who is looking into making him feel better!
Becky

On a side note aobut headaches. My daughter never complained of headahces but in hindsight I believe she was waking up with one everyday. For quite a long time before her diagnosis kathleen would wake up crying every morning. She would start crying even while she was asleep and cry until she actually sat up and was moving. I jsut thought it was "her way" of waking up.(just a little mom guilt left there for that one). This stopped sometime after ehr surgeries. One of her strokes was actually while she was asleep.She woke up and couldn't use her right arm.She lifted it to open the fridge and couldn't so in true form she didn't miss a beat and just used her left to do it. I on the other hand freaked...... From what I've learned blood pressure is a factor for strokes and sleeping is a time it may have been too low for her.
Mary Grace