I need wisdom

By terry Sunday, January 04, 2009

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I have a 28 year old daughter who has a 24/7 chronic daily headache. She is never without pain. She weighs about 260 lbs. and is 5'7.

There are times when she seems perfectly fine. She says she cannot work, but is able to do other things then stays in bed for days.

We have seen a number of doctors and cannot get and defintive answer, cause or resolution. My husband and I do not want to treat her unfairly but paying cobra is a real struggle and it is hard when sometimes you just can't tell.

She had her first migraine at 5 and I also have migraine she has a va shunt and lumbar shunt which we seemed to have deteremined by the process of elimation that she never need the shunts they thought she had pusteo tumor cebri.. her neurologist has taken her off caffine, pain medicine but there was no change except the pain was more obivous. If you have any suggestions i would welcome a response.

concerned

mother

Comments (4) | Add comment

Nancy Harris Bonk, Health Guide

1/ 5/09 3:52pm

Hello, and welcome to MyMigraineConnection.com!

I'm so sorry to hear your daughter is in such pain. Chronic pain is exhausting and frustrating for the entire family. Let's see what information and support I can give you. How does that sound?

Migraine is a genetic neurologic disease. Migraines can be extremely disabling - some members are on SSDI due to intractable Migraines. Some Migraineurs only get Migraines once or twice a year. Others get attacks so often they need preventive, abortive and even rescue medications to manage their Migraines. Did you know there are four phases of a Migraine attack? I realized that when I started educating myself about Migraines so I would be well informed patient. This article is very good: Anatomy of a Migraine.

Pseudotumor Cerebri, aka Idiopathic Intracranial Hypertension (IIH) may have a host of symptoms that can produce debilitating head pain on a daily basis. The only way to definatively diagnose IIH is with a lumbar puncture. For more information on this condition read our article: Pseudotumor Cerebri (IIH) - The Basics.

A Migraine specialist would be the best doctor for your doaughter to see now. These are experts who devote their entire practice treating people with Migraines and headache disorders. You can find a list of our patient recommended speicalists HERE.

Thank you for creating a SharePost. SharePosts are a form of blogging, and there are many things you can do with them. You can share an experience, suggest something that's helped you, use SharePosts as a Migraine and headache journal, and many other things.

We also have a discussion forum that you may want to check out. Especially if you have questions or are looking for information, you may find the interaction on the forum to be quite helpful. To get to the forum, just look for the orange box marked "Manage" and click on the Migraine Forums link. Because our forums are maintained by a third party, you'll need to register for the forum. You can use the same information you used to create your community log-in if you like. If you want to go directly to the forum, you can click HERE.

Along with your personal "My Home" page and the discussion forum, you'll find links to a great deal of helpful information and a spot to sign up for our free newsletter on the main page of our site, http://www.MyMigraineConnection.com.

If you have any questions, please feel free to post them to the forum or send me a message through my profile.

Welcome again,

Nancy Bonk
MyMigraineConnection.com Expert

Migraine Mom

1/ 6/09 7:43am

I am sorry for the pain your daughter is in and for your family because migraine can be a family disease. Please seek out healthcare professionals who will work with your daughter in a holistic way - looking at medicines, nutrition, lifestyle, etc. She may have many triggers, some of which can be minimized by changes in her treatments and lifestyle. Even when your daughter seems functional, she may only be able to do certain things because of varying pain levels - concentration may be difficult. I have a 21 year old daughter who has suffered since she was a little girl. This year, after many years of different medications, she developed chronic daily headache, always had pain in her neck and pressure in her head. Even though she was functional, her quality of life was not good. The daily headaches developed into migraines that would last 3-4 days at a time and finally put her in the hospital. We are ten weeks from the last hospitalization. On the recommendation of her headache specialist, my daughter is off all medicines except elavil at night and is working with a naturopathic doctor for nutrition and homeopathic remedies, and she goes for weekly rolfing (a physical therapy) and biofeedback therapy. It's been a bumpy ride but mostly up hill and as I write this, today is the eleventh day my daughter is completely pain free. Encourage your daughter to find treatment that works for her, and if cobra costs are too much look into disability. There is information and links about this on this website if you put it in the search bar. Good luck.

terry

1/11/09 2:17pm

thank you so much for your comments. Is your daughter able to work? What do think worked to bring about 11 days of pain free, and what was she able to do in those days? If you are willing to share.

I can't thank you enough for your willingness to help

Have a great day and hoping sometime in the near future I to can say my daughter is in no pain

Migraine Mom

1/11/09 10:00pm

My daughter has always been functional despite daily pain. She is a senior in college and has worked hard to complete her coursework and do well. I believe she will find meaningful work because she is committed to living the best life she can and not letting the migraines trap her. As for what she was able to do during her pain free days - doing what she usually does, but enjoying the time pain free, and not having to stop to lay down or medicate, or push herself through the pain.

What is working now to contol the migraines is a holistic approach. We switched doctors at the headache center that has been treating her for several years. The first doctors' approach was to try different meds and if they weren't working to try different combinations and dosages. After my daughter was hospitalized in October, we started seeing a different doctor in the practice who thought the medicines were contributing to rebound and causing the chronic pain. This doctor took her off everything except one preventative (elavil) and told us to expect it to be very tough for about 2 months. During this time, my daughter also started seeing a naturpathic doctor who gave her homeopathic remedies and nutritional supplements and she started physical therapy with a rolfer (my daughter had 2 whiplash injuries in the past). More attention to diet has been important as well. My daughter is cooking more, eating organic, limiting sugar, eating more fruits and veggies, etc. The 2 months were actually better than before. When we went for a follow up at the headache center, it was decided to stay the course and evaluate again in February. When she does get a migraine, the doctor gave her lunesta so she can sleep it off without danger of rebounding and so far she has not needed this frequently.

The biggest difference has probably been the rolfing. There were some structural issues from the whiplash that had not been resolved and had worsened over time. There were some sinus issues that the rolfer has been working on too. My daughter is much more attuned now when she feels a headache starting and can tell whether it is from her neck, sinus, low blood sugar, weather, etc. She feels much more in control now.

Living completely migraine free would be a dream come true, and neither she nor I is ready to believe that will happen. But getting to the point where it might just be once or twice a month makes for a much better quality of life and that's where we are right now.

Hope this information has been helpful. Don't give up!

I need wisdom

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