Newbie reached desperation point

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Newbie reached desperation point

Post by sarlyka on Sat May 12, 2012 2:49 am

Hi,

I've been suffering with chronic migraines since a minor car accident 3 years ago. The migraines have steadily increased in frequency and severity to the point where I now have constant head and neck pains and migraines every 2 to 3 days. Every couple of weeks, I have a severe one which wipes me out for 3 or 4 days. I have had to give up work due to being unable to drive very far and just being very unreliable.
Medications tried: all the migraine, anti-depressants and epilepsy drugs and greater occipital nerve block injections. Recently went into hospital to have iv DHE and had two migraines whilst on the treatment.
Neurologist thinks botox won't be suitable for me so I'm hoping he comes up with something else.

Currently taking slow release morphine and cyclizine daily.

Migraines are triggered by movement of my neck, shoulders and arms. Worst activities are driving, gardening and hoovering!




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Re: Newbie reached desperation point

Post by Tee on Sun May 13, 2012 8:42 pm

Hello sarlyka and welcome

I a sorry so to read you are having such a bad time of things........

I assume by what you have said you have Basilar migraine? Hard one to manage as its all to do with neck movement.....

Have they not found anything in the scans of your neck and shoulders?

Why would botox not be suitable? If he gave you GONB why would the Botox not be suitable - it is given in the head, neck and shoulders?

Hugs

Tee

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Re: Newbie reached desperation point

Post by sarlyka on Sun May 13, 2012 11:28 pm

No one's said I have Basilar migraine but neuro consultant says the migraines are linked to problems with my neck. I've had MRI scans on my neck and head but they didn't find anything of great significance. Having said that, neuro consultant said there was a nerve impingement which was 'not insignificant'. I'm hoping he will investigate the neck problem now and try to find the cause of the migraines.
My first GONB was great and I was totally pain free for 5 days! It was absolute bliss and lovely to remember what life is like without pain. Sadly, the pain came back very quickly. My second GONB did nothing.
Maybe they will give the botox a try as I haven't anything to lose and it just might work.

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Re: Newbie reached desperation point

Post by Tee on Mon May 14, 2012 12:19 am

I would talk to them again re the Botox - as you say you have nothing to lose - Of course (like everything we try) it will not work for everyone - but the nice thing about this treatment is that it does not enter the blood stream so the side effects are minimal.... if the GONB helped I would have thought you were a good candiate for botox as its given in the head, neck and shoulders... Funny enough my first GONB was nice and the 2nd did nothing..... Botox has been much better, but taken a while to give full effects - my 1st round took 8 weeks to kick in and I was rough, 2nd round took about 6 weeks to kick in and 3rd round about 3 - and then it was heaven - I still have daily numbness and pain - but at a level 2/3 which I can live with Smile

Just had round 4 2 weeks ago and I am up and down a little if I am honest.... but its only been 2 weeks.

I would also ask Dr W about Basilary - it might not be - but that is often linked to the neck and the way you move and hold your neck becomes important...

As a second thought - what pillow do you use? I ask as I used to have a lot of neck pain until I changed to a Mediflow (water) pillow?

Hugs Tee

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Re: Newbie reached desperation point

Post by sarlyka on Mon May 14, 2012 1:05 am

I'm currently taking MST morphine, cyclizine and diazepam just to control to daily pain. Of course, I can't drive if I take these. When the migraines kick in, I start with Imigran sprays or injections and Oramorph. If that doesn't work, we have to either call the doctor out or go to A&E for iv morphine. That used to work immediately but recently, it's taken 2 or 3 shots before the migraine has started to subside.
Last 'big' migraine (last week) went on for 4 days and I was effectively bedridden for the duration.
Trying to do any sort of work is near impossible. I''m self employed so no sick pay etc. I have to keep cancelling appointments I've made. My clients respond with, 'when you're better, can we make a new appointment?'
But, it's not a case of getting better, it's just finding a reasonable gap between the migraines.

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Re: Newbie reached desperation point

Post by Sarah on Mon May 14, 2012 4:24 am

Have you tried an osteopath or similar? Or myofascial release? Not many practitioners do that, but it's a good technique.
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Re: Newbie reached desperation point

Post by sarlyka on Mon May 14, 2012 5:05 am

Hi Sarah,
No, I haven't tried any of that. I had acupuncture but it was really painful all the time the needles were in. I had physio but the exercises caused migraines. Just sitting turning my neck slightly to the right is enough to bring on a migraine.
It's difficult to know who the good osteopaths are and I'm worried that I may end up even worse than I am now.

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Re: Newbie reached desperation point

Post by Sarah on Mon May 14, 2012 5:11 am

Yes, I know just what you mean... both about the acupuncture and the fear of someone making things worse.

When I had acupuncture, every time I had it, the needles were getting more and more painful. It got to the point where I'd rather be at the dentist than there, so I knew it was time to give up - plus I was getting no relief!

A very gentle technique is craniosacral therapy: http://www.craniosacral.co.uk/

I think if I were you I'd want to start with an osteopath - perhaps talk to them on the phone about your fears and ask if they have treated something similar. In my experience, osteopathy is very gentle - much more so than chiropractic, say.
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Re: Newbie reached desperation point

Post by Dr Pav Khaira on Mon May 14, 2012 7:08 am

Sorry to hear you're having a rough time!

From the sounds of things, you may also have a ligament insertion injury. This is incredibly common in whiplash type injuries and they linger for years or longer. The reason for this is that ligaments do not have the same blood supply muscles do, and therefore do not heal properly

Is the medication helping at all?
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Re: Newbie reached desperation point

Post by sarlyka on Mon May 14, 2012 7:26 am

Hi Pav,
The medication takes the edge off the pain so I'm able to potter around and do a few things. My shoulder and arm are very weak and I can't hold my arm up for any length of time. I'm trying to complete a training course and need to attend for one hour twice a week. On those days, I can't take any meds because I wouldn't be able to drive. One the days in between, I have to rest otherwise I'll trigger a migraine. So life is very sedate, which isn't my style at all. Yesterday, I went on a 20 mile walk with my local ramblers group. Walking is usually ok because I'm upright and not putting extra strain on my neck.
What would you suggest for the ligament insertion injury? I am so desperate to have my life back. I used to be really active: climbing, kayaking, skiing etc. I feel that the medics are pushing me into a managed decline and I'm not ready for that.

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Re: Newbie reached desperation point

Post by Dr Pav Khaira on Mon May 14, 2012 10:59 pm

Ligament insertion injuries ar difficult, and because of this often overlooked.

My protocol would always be to control the muscles and neurological component first and see what happens to the symptoms. If they don't resolve then you move onto the next stage which is very much dependent on your symptoms and what we find.

Has your doctor found out what's causing the weakness? It may purely be related to the migraines but you need to rule out any other pathology
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Re: Newbie reached desperation point

Post by sarlyka on Tue May 15, 2012 12:36 am

No one has shown much interest in my neck. I had nerve conduction tests to rule out carpal tunnel syndrome. I also had a steroid injection into my shoulder. I feel as though everyone is avoiding my neck and concentrating on the peripheral symptoms.

I don't think the migraines are causing the weakness but no one has suggested anything else.

I did see a doctor at a pain clinic. They told me my pain was caused by depression!!!! Needless to say, I haven't been back.

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Re: Newbie reached desperation point

Post by Dr Pav Khaira on Tue May 15, 2012 12:58 am

Ah yes, pain clinics! I think pain clinics are actually good, but they are designed as a 'final stop' for those who have chronic pain and tend to be based upon management of symptoms as opposed to trying to figure out what is going on.

Your neck definitely needs to be seen to. Where do you get the pain in your neck/shoulders?
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Re: Newbie reached desperation point

Post by sarlyka on Tue May 15, 2012 2:21 am

The neck pain is mainly down the right hand side and around the base of my neck and across both shoulders. I had a C4/5 discectomy and fusion about 15 years ago, and made a full recovery. The shoulder pain is more on the right side - across to the top of my arm and down my shoulder blade. It feels very tender to touch. Then I have pain down my arm, especially in my elbow and down to my wrist and hand. I get spasms in my hand/fingers and my fingers cramp up. Sometimes my hand feels as though I've got an elastic band around my wrist. My fingers feel 'chubby' and I have little feeling in my finger tips.
When I have my really bad migraines, my neck goes into spasm - at the base of my skull and down the back of my neck.
I probably haven't explained this very well. The pain isn't one specific pain, it's lots of different ones so difficult to describe.

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Re: Newbie reached desperation point

Post by Dr Pav Khaira on Tue May 15, 2012 2:31 am

Lightbulb!! I'd hazard a very confident guess that your shoulder pain is related to your migraines closer than you think. The key is that it feels much worse when you have a migraine

The muscle groups are all related

Do you have any other problems at at? Ankle, knee, hip, sciatica, lower/mid back?
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Re: Newbie reached desperation point

Post by sarlyka on Tue May 15, 2012 3:21 am

I get occasional lower back pain, usually if I've lifted something awkwardly. Nothing else though.
Do you think the neck/shoulder problem is causing the migraines, or vice versa? And what can I do to improve things?

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Re: Newbie reached desperation point

Post by Dr Pav Khaira on Tue May 15, 2012 4:36 am

In my experience the same drive which is causing your migraines is causing your neck pain.

The neuropathological drive which causes the pain in your head is preceded by a similar drive in your neck and shoulder muscles, it's actually a common nerve branch. I've been open about the fact that this is jaw clenching and grinding

I hope you can appreciate I really can't say too much with regards to how to best help you without an examination, BUT there is hope!

It is possible that these issues are causing the numbness sensation. It's one of my examination questions, although this link to the migraines is much weaker. Basically this means the numbness and weakness may go, but the neck.should pain should certainly go. I've treated people for purely neck and shoulder pain as upon examination they exhibit all of the signs and symptoms that lead me to believe I can help them. Sometimes I can't but it's usually worth a try!

Getting to another level completely, I work alongside a chiropractor who deals a lot with collapsed arches in feet. I know doctors say chiropractic work is pseudoscience, tell that to the patients we've helped! The body is an intricate system and we've demonstrated how problems in the feet can cause issues in your neck and how altering how your jaw comes together can alter your walk. And all of this has weird pains all over

It's crazy!
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Re: Newbie reached desperation point

Post by sarlyka on Tue May 15, 2012 5:25 am

So will the problem show up in any scans (MRI/CT) or do I have to hope the neurologist makes the connection? I have told him I think the neck problems are causing the migraines.

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Re: Newbie reached desperation point

Post by Dr Pav Khaira on Tue May 15, 2012 6:09 am

Definitely won't show up in MRI or CT scans. Your neurologist may know but it's unlikely

The stuff Aidan and I are working on is pioneering and undocumented.

I think neurologists are superb, and I certainly don't have thier depth of knowledge. But I don't want or need it, they don't understand the complexities of what I do and it's very much a team approach. Without my team my success rate would plummet
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Re: Newbie reached desperation point

Post by sarlyka on Fri Jul 06, 2012 3:38 am

So, a rheumatologist has decided I have myofascial pain syndrome but this isn't linked to my migraines.

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Re: Newbie reached desperation point

Post by Dr Pav Khaira on Fri Jul 06, 2012 4:54 pm

Myofacial pain is often very easily dealt with. Hate it when it gets called a syndrome, which implies the cause is unknown
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Re: Newbie reached desperation point

Post by sarlyka on Fri Jul 06, 2012 5:28 pm

That's good to hear Pav. Treatment suggestion is a multidisciplinary pain management programme - trigger point injections, physio, CBT etc.
Would like your opinion on this as I would either have to do a very expensive residential programme or travel 15 miles to the nearest hospital each time (takes about 3 hours each way by public transport).

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Re: Newbie reached desperation point

Post by Dr Pav Khaira on Fri Jul 06, 2012 8:08 pm

It's difficult for me to say as I've not seen you. However trigger point injections, physiotherapy, CBT are all things I have never used and my methods are designed so you don't need these. Don't get me wrong, these may work and are the treatment modalities used by my medical colleagues

I just use a different tool than doctors do, just happens to be I get good results. In my experience, there tends to be a lot of confusion with this type of stuff. Again the issue being is that is you, the patient, that suffers!
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Re: Newbie reached desperation point

Post by sarlyka on Sun Jul 15, 2012 8:02 pm

Yesterday I woke up with a horrible pain in the left side of my neck, radiating up the left side of the base of my head. I tried Imigran nasal spray with no success, then diazepam with buccastem, then Oramorph, more diazepam and finally, after about 10 hours, the pain began to subside.

Today, I feel ok and, reflecting on the recent diagnosis of myofascial pain syndrome, I wonder if yesterday's episode was actually a migraine. I can't identify anything that would have triggered it. Usually there is something such as a long drive or a stressful day, but Friday was very quiet and calm.

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Re: Newbie reached desperation point

Post by lissah on Sat Jul 28, 2012 6:25 am

Sarlyka, hello I just joined this site this week. I came across your post and I am sorry to hear what you are suffering through. I have been a migraine suffer off and on since my early 20s. I was in a wreck back in 2002 I think it was. Anyways, I was told I was very lucky to have survived. If he had hit me a little bit sooner or a little bit later I would not have survived the wreck because of where he hit me. The wreck pushed me off the road, into and out of a ditch then into a tree. After the accident I started suffering with severe headaches, not like my migraines. I kept going to the doctor, kept getting poked, tested, medicated no one had any answers.
I knew how bad the wreck had tossed me around so I took it upon myself to go see a chiropractor. I was desperate at this point. I took advantage of a new screening they were offering for free. What the screening has shown was that the accident actually knocked my head way off center from my spinal cord. I have curvature of the spine so getting everything exactly back in alignment would not be possible but he said that he could get my head back into a better alignment with my spine and that should improve my headaches. The first week or two of adjustments were shear "he_l_l" sorry about the word. But at the end of 9 weeks of treatment he was able to stop the odd and severe headaches. Those headaches were nothing like my migraines but were, in the end, more treatable than my migraines.
Have you seen a good chiropractor? Have they checked your skull and spinal alignment?
Hope that things are improving for you.
Lissa
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