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        Cluster Headache Help and Support >> Cluster Headache Specific >> UNUSUAL SYMPTOMS HELP PLEASE 
        
(Message started by: BB on Aug 3^rd, 2006, 1:50am)

Title: UNUSUAL SYMPTOMS HELP PLEASE
Post by BB on Aug 3^rd, 2006, 1:50am

Hello,

My name is Annette and my DH is in day 6 of his first cluster. We live in Sydney, Australia.

He started having headaches, ear pain and dizzyness 2 weeks ago and was diagnosed with middle ear infection and given antibiotics, which didnt help of course. 6 days ago the pain started to be more severe and coming twice a day at 1pm and 1 am , like clockwork. He also started to have droopy left eyelid and slurring of speech during the attacks. He was then diagnosed with cluster headaches.

He has started on prednisone but it hasnt done much, he is still getting 2 attacks per day but since starting Imigran ( which is Imitrex ) the attacks have shorten from 2 hrs to 30 mins and less intense. Thank God for that.

I have tried to read as much as possible on the topics in order to understand and to help him whenever/whatever possible. I noticed though that he has a few symptoms which dont seem to be described anywhere so I post them here, hoping that someone can shed lights for me or maybe someone has had similar experience.

First is that during an attack he gets very very cold instead of hot.

Secondly he gets a almost rhythmic jerking movements that often precede the pain , which start from the front abdominal wall, radiated to his upper back and neck causing his body to jerk forward. He has no control over them and they can lead to loud burping, and dry retching, occasionally vomitting.

Thirdly he gets quite drowsy during an attack and his speech becomes quite slurred, especially when the left side of his tongue swells up. He also stutters and his vision becomes quite blurry, occasionally seeing blue or white light or black spots.

Please of someone knows what these are or have experienced them , let me know so that I can be assured that its just part of the cluster.

Thank you all very much.

Annette

Title: Re: UNUSUAL SYMPTOMS HELP PLEASE
Post by chopmyheadoff on Aug 3^rd, 2006, 2:02am

this post worries me, I AM NO DOCTOR but these symptoms sound like it might be something else rather than cluster headache.
I dont like the bit about the tongue swelling up one little bit. Also, no body (to my knowledge) who has CH has ever describes the visual disturbances that your husband had.
And another thing, the imitrex should work completely, or not at all.
The pred should work for CH too.

This sound very messy to me, i presume you have told your neurologist about all these symptoms . .

As i said im NO DOCTOR , this is just my opinion.
[smiley=twocents.gif]
Hope you get to the bottom of it

Chop

Title: Re: UNUSUAL SYMPTOMS HELP PLEASE
Post by BB on Aug 3^rd, 2006, 3:35am

Thank you very much.

These symptoms only started 2 days ago, we are going back to see the neurologist tomorrow and will ask him then.

I hope he knows what it is.

Annette

Title: Re: UNUSUAL SYMPTOMS HELP PLEASE
Post by chopmyheadoff on Aug 3^rd, 2006, 3:58am

good luck and please keep us informed - i would be interested to know whats going on

choppa

Title: Re: UNUSUAL SYMPTOMS HELP PLEASE
Post by erickthered on Aug 3^rd, 2006, 4:07am

Like Chop I'm no Dr. either, but when I dance with the beast (kip 7+) my left eye gets blurry and waters really bad (but that might be from me pushing the palm of my hand into it, cause it feels better then the CH), and Please do ask the Dr. about it, cause that sounds bad [smiley=frown.gif]

Title: Re: UNUSUAL SYMPTOMS HELP PLEASE
Post by bluebrain on Aug 3^rd, 2006, 7:19am

I do agree with all the answers given, it doesn't seem to be Cluster Headache, try a new neurologist, get a second diagnose/opinion.

Title: Re: UNUSUAL SYMPTOMS HELP PLEASE
Post by Charlotte on Aug 3^rd, 2006, 8:07am

People often have coexisting conditions. My ch sometimes triggers a migraine and the migraine includes some visual disturbance, nausea, & difficulty in communicating. It's important to identify things & rule out things, but it is tedious & frustrating.

It'g good that you're checking it out. You might want to write it out or print out your post to take with you to the neurologist.

Good luck & please keep us informed.

Charlotte

Title: Re: UNUSUAL SYMPTOMS HELP PLEASE
Post by pattik on Aug 3^rd, 2006, 8:16am

The regularity of the headaches suggest cluster, and even feeling chilled. Usually I feel flushed and warm, but the autonomic symptoms can go either way, and I have also felt chilled on occasion. The rest of the symptoms you mentioned sound very ominous, and DH needs further testing by a neuro. Good luck.
Patti

Title: Re: UNUSUAL SYMPTOMS HELP PLEASE
Post by Charlotte on Aug 3^rd, 2006, 8:28am

Many of us rock and pace when we get hit. I squirm all over, rock, & pace. It is sometimes impossible to be still.

Charlotte

Title: Re: UNUSUAL SYMPTOMS HELP PLEASE
Post by BB on Aug 3^rd, 2006, 10:30am

Thank you very much for your replys.

I will definitely ask the neurologist and will post his reply here.

It maybe some symptoms of migraine? as its not there all the time. He has just had another one, this time the pain stopped completely after 15 mins with the Imigran but still felt exhausted and washed out.

There was no nausea or vomiting this time, just the drilling in the back of the head and behind the left eye. He described it like a burning steel rod pushing his eyeball out ! Sounds absolutely horrible!

BB

Title: Re: UNUSUAL SYMPTOMS HELP PLEASE
Post by nani on Aug 3^rd, 2006, 10:31am

I agree that he should see another dr. Some of his symptoms are classic CH, but the others are more like a rather dangerous type of migraine. I think they're called BAM. I don't have time to look it up right now, but maybe you can?
pain free wishes to your home, nani

edited, because I googled it:

Basilar Migraine

When migraine affects the circulation in back of the brain or neck, it can cause Basilar Migraine or Bickerstaff's Syndrome. It occurs most frequently in young women. Dizziness, double vision, loss of balance, confusion, slurred speech, fainting and disorientation can occur. During the acute headache, some lose consciousness. Often these patients are mistakenly thought to be intoxicated, under the influence of drugs, or suffering from other conditions. A previous history of migraine is helpful in making the diagnosis.

Title: Re: UNUSUAL SYMPTOMS HELP PLEASE
Post by BB on Aug 3^rd, 2006, 11:47am

Thanks Nani,

Thats very helpful and concerning.

So off to drill the neurologist !

Annette

Title: Re: UNUSUAL SYMPTOMS HELP PLEASE
Post by kevinpix on Aug 3^rd, 2006, 2:35pm

Sounds like me. too. I would get seizures, had the doctors stumped. I would scream in pain, get cold chills, panic as if I was dying, then sweat, scream, get cold again, over and over for hours! I couldn't handle it, got surgery, painfree eversince; about two yrs. now! Hope you go to doctor and get on verapamil, predizone, or the like and try to get oxygen, it worked best for me, I'm chronic, by the way. Also heard REM sleep is a trigger, I always got them about 3 hours after going to sleep! Hope this helps, if not, read all you can!!!

Title: Re: UNUSUAL SYMPTOMS HELP PLEASE
Post by Barry_T_Coles on Aug 4^th, 2006, 10:11pm

Hi Annette
Barry from the Pilbara in WA.

Firstly welcome and thanks for being a supporter for DH we all need that.
Has he had an MRI done through the Nuro yet, if not the Nuro should make sure that is done to rule out anything else.

A lot of the descriptions you have related do reflect CH “ and I’m no doctor “ but there are a lot of other things that can be closely aligned to CH.

Apart from CH I suffer from Restless leg & arm syndrome along with exploding head,
These conditions as I understand it all come from having a buggered hypothalamus and the Nuro should pick these up.

The MRI really is worth the cost and the Nuro will be able to rule out or confirm any other condition, when I had mine done they found that I had cervical spine damage but no signs of stroke, scaring or growths & that does put your mind at rest.
Also has your Doc or Nuro suggested oxygen as an abortive, it’s my saving grace and is a lot cheaper than medication.
Hope you next visit to the Nuro brings some good news.
Keep us updated & we’ll help where we can.

Kind Regards
Barry

Title: Re: UNUSUAL SYMPTOMS HELP PLEASE
Post by BB on Aug 12^th, 2006, 6:33am

Hello all

Time for an update.

My DH has seen the neurologist, had MRI scan and even a lumbar puncture and all were clear.

The slurring of speech and jerking motions and weakness of the left side disappeared with 02 as soon as he started using the 02. Also Imigran ( Imitrex ) works much better for him now. The tablets take about 15 mins and the injection is almost instant.

The neurologist told us that he definitely has cluster but developed symptoms of basilar arterial ischeamia ( swelling of tongue, slurred speech, jerking motions etc ) possibly due to the fact that he used to stop breathing for several minutes during the attacks prior to getting the 02 treatment.

The only thing he complains of now is the burning of the left side of the brain and the left eye plus the pressure above the left eye, those symptoms dont go as quickly as the drilling behind the eye with Imitrex and often requires strong pain killers to get rid of.

Some days he continues to have a dull pressure on the left side of the head and some burning behind the left eye all day. Is this what people often refers to as the " shadow" ?

Thanks all for reading and for your input.

Annette

Title: Re: UNUSUAL SYMPTOMS HELP PLEASE
Post by Charlotte on Aug 12^th, 2006, 7:26am

Thank you for the update. I'm glad you acted quickly, (although it probably felt like it took forever).

I apologize if this sounds wrong, but try to find something other than the pain pills, if you can. Two problems are 1. as the body gets used to them,they can stop working, and 2. they can be addictive.

Good luck. I hope you both are feeling better as he gets some of his life back.

Charlotte

PS I'm not ignoring your question about shadows. My neurologist thinks I have something else, so it would be best if someone else addresses it, and I'm sure someone will soon.

Title: Re: UNUSUAL SYMPTOMS HELP PLEASE
Post by BB on Aug 12^th, 2006, 10:02am

Thank you very much Charlotte

You are absolutely right about the pain killers. I am quite concerned as he is needing a fair few. The neurologist said that he has developed " pain syndrome" where he is in fear of the pain itself.

I have made an appointment for him to go to the Pain Clinic where they will be able to assess his pain level and advice on what is the best course.

I will post again once we have been to them.

In the meantime, thank you all very much for this wonderful forum. It has given me knowledge as well as strength and comfort to continue supporting him. Someday when I feel that I dont even have the strength to cry I come here and read a few posts and immediately feel better.

Thanks again you are all God sent angels.

Annette

Title: Re: UNUSUAL SYMPTOMS HELP PLEASE
Post by Katherinecm on Aug 15^th, 2006, 1:18am

I often feel cold when I'm having an attack; if it's not an attack triggered by heat I often get low-grade fevers (typically under 101F) and feel chilled. I've heard this is a normal nervous response.

The other symptoms are suspicious though, if you hear "CH" again I might get yet another opinion, just to be safe.

Title: Re: UNUSUAL SYMPTOMS HELP PLEASE
Post by Karla on Aug 15^th, 2006, 5:13pm

I used to have epilepsy for 28 years and it sure does sound like that in many ways. I have a friend who currently has epilepsy. She gets 3 different kind of siezures. But with all of them she gets a severe headache afterwards sometimes they trigger migraines in her. All she remembers is getting a bad ha and being told she has jerking motion and slurred speach etc. Please see a different neurologist and get a second opinion. It could be epilepsy triggering ch or migraine. Please keep us posted. Thanks.

Title: Re: UNUSUAL SYMPTOMS HELP PLEASE
Post by Anne_L. on Aug 16^th, 2006, 6:44am

I have both migraine and clusters and I swear they can hit at the same time. I sometimes have the kind at the back of my head (like right now) which in the extreme makes me dizzy and nauseated. My migraines seem to come when I'm under any kind of stress and for sure being in a cluster cycle is great stress especially at the beginning. Lack of sleep does not help either. The pattern has continued like this over the years and I sure don't like it and of course no one around me really understands what I am going through which adds even more stress. What helps me (besides Imitrex) is to try to take each thing thrown at me as it comes and not to sweat other stuff during a cycle. Of course, getting other things ruled out (first time Ithought I had a brain tumor) is where to start.

Title: Re: UNUSUAL SYMPTOMS HELP PLEASE
Post by BB on Aug 19^th, 2006, 10:39pm

Hello all,

Just an update on my DH's condition.

He is now on Verapamil and Valproate for preventative meds, 02 and Imigran for abortive meds and Lyrica for neuralgia.

I am happy to report that the number of attacks have reduced from up to 8 a day to 3-4 a day now. The length of each attack has reduced also from 1-2 hrs to 30-40 mins and the intensity of the pain has also reduced from a KIP 9-10 to about 7-8.

All the previous "weird" symptoms such as slurring of speech and jerking motions are now gone. He now has the classical drilling/burning sensation and no more photophobia or vomiting. Although he gets a bit light sensitive afterwards.

We have also started on melatonin to try to get rid of the night attacks which he gets 2 hrs after falling asleep.

However, as the cluster seems to come under control, he has developed symptoms of trigeminal neuralgia where he gets an almost constant burning sensation on the left forehead and left temple to behind the left eye, causing a form of headache in its own right in between the attacks. He says its very tiring trying to cope with it and it often makes his left eye blurry and hard to focus. Thats why the neuro started him on Lyrica. I hope the med will kick in soon. The poor man has not been able to return to work for 3 weeks as he always gets an attack smacked bang in the middle of the day, between 1-3 pm.

Hoping and wishing that you are all painfree and well.

Annette