I am seeing a doctor (Dr Hepworth) who is taking my symptoms seriously and has ordered an angiogram to see where my jugular vein is compressed and what is causing it. (Already had CT scan, ultrasound and eye exam.) I am waiting to get it approved by insurance so I can schedule it.
I’ve been dealing with “migraines” (pain behind right eye) intermittently for years and then since March have had horrible neck, ear, shoulder, arm pain on right side. I had been using tramadol to control this pain for a while but my doctor does not want me taking it any longer. Understandable. However, I am in so much pain the past two weeks I feel like I am losing my mind. For the past few months I was at least able to sleep OK and really the only time I did not feel horrible is right when I would wake up. Now, I cannot sleep, symptoms keeping me awake. I have stabbing pain behind my right eye all of the time, my throat is burning and feels like my ear is full of fluid or something. I am desperate for relief. I called the doctor’s office last week and they recommended I try Aleve instead of ibuprofen and to drink dandelion tea. The aleve does not do sh*t, I can’t really notice a difference with the tea. Aleve works worse than ibuprofen (which I am taking about 1200 mg per day, when not taking aleve. Not great I know.) I am not seeing the doctor again until August 27 and do not even know when I will have the angiogram done at this point. Even then it’s just a test and not treatment. I am at a loss and feel so worthless. I don’t know how much longer I can take it and have even considered walking into the ER just so maybe I can feel normal for a day. It’s just really taking a toll on me and it seems like my symptoms are worsening. I went on a 4 mile hike yesterday and did have some relief during that time and part of the day, but this morning it is so bad again and I barely slept. Does anyone have advice? Is it acceptable to call my doctor’s office and tell them what I am experiencing? I cannot deal with this level of pain for another month. I feel like last week when I called the nurse seemed annoyed and assumed I was drug seeking. Doesn’t help that I am a terrible advocate for myself and am pretty scared and terrified of doctors. I honestly will try anything recommended at this point. It would be one thing if there was a light at the end of the tunnel with a treatment or surgery but I’m still doing tests and they don’t even know for sure if it is my styloid or what. I’m only 30 years old and feel sad that this is my life right now. People close to me are sick of me complaining about this nonstop, so I’m posting/venting here instead. Any suggestions much appreciated!
Please try sleeping w/ your head elevated significantly. You can purchase a wedge pillow from Bed, Bath & Beyond for about $25. You can add pillows to it to make a steeper incline. We’ve seen some good pain relief for people who are “in process” when they’ve tried this. Additionally, icing your neck 15 min on & 45 off can also help. In rare cases, ice aggravates but heat helps so that’s another option.
“The squeaky wheel gets the grease” as they say. I would call Dr. H’s ofc again & ask for a call back from Dr. Hepworth so you can tell him directly how you’re feeling. His hearing it from you as opposed to reading a note written by someone at his front desk should make a difference. Getting an Rx a nerve pain med like Gabapentin or Amitriptyline might work better than a standard pain med, but these can take several weeks to kick in & the dosage often has to be fiddled with to find the most effective level.
I suspect your arm/neck pain is coming from your accessory nerve & the pain behind your right eye is either trigeminal or optic nerve - most likely trigeminal which is also the cause of the ear pain. As Jules said, the optic nerve is only problematic w/ significant jugular compression. I realize this is still an unknown for you. The accessory & trigeminal nerves are commonly affected by ES as is the vagus nerve.
Please keep reaching out here. We’ll do what we can to be good listeners & offer the best possible support. Wish I could give you a hug & more reassurance. Once the ball really gets rolling w/ a diagnosis & treatment plan, this will all be just a memory.
The sleeping semi-upright helped me quite a bit. As Isaiah says, ice helps, although it didn’t for me, I found heat was better, & I would sit every evening with a hot water bottle on my neck & face. I was prescribed Amitriptyline for nerve pain- it did help, & also the bonus was that it helped me sleep too!
Doctors can do a steroid/ lidocaine injection into the styloid area, so maybe this is something you could ask for? It doesn’t help everyone, but some members have found it helped them temporarily until they had surgery. I don’t know if Dr Hepworth does this?
Other members have suggested Baclofen to relax muscles, & lidocaine patches stuck on the painful area of the neck.
The only other thing I can suggest is getting back to your doctor to explain that the Tramadol did really help, & that you’d like to keep taking it for a limited period while you get diagnosed & hopefully surgery? That it’s not a permanent thing…explain how bad you’re feeling now it’s stopped?
Thinking of you…
Thank you both so much. You are angels! I had a few tramadol leftover from my last prescription, just have been trying not to take them. So I took one and am feeling 75 percent better at least for now. It at least helped me calm down and rest.
The wedge pillow and ice is a good idea. My partner has sleep apnea and when I mentioned this suggestion to him he told me he has a wedge pillow that he doesn’t use!!! It was under our bed, so hurray! Going to try that tonight. I had been using bio freeze at the doctor’s suggestion (kinda like icy hot but without the hot sensation) and it helped more than heat, currently icing to see if it offers a bit of relief.
I really appreciate pep talks about calling. I sometimes feel like a pest and I don’t know why it causes me so much anxiety to advocate for myself. My partner is very supportive and also sees Dr. Hepworth, he has for years and is the one who recommended him when this all started… we discussed what is going on and he offered to call the office tomorrow to see if we can switch appointments… he has one this week and mine is scheduled end of August. If we can’t switch, then I’ll call and request a call back. That is a good idea @Isaiah_40_31 even if he can’t call me back perhaps will convey my urgency. I am also going to call the neuro vascular doctor tomorrow to see what is going on with my insurance pre approval with the angiogram because I’d really like to get this show on the road.
I do not want to be on pain meds however I was only taking one pill per day, in the afternoon, and that always seemed to knock it back enough to make me feel ok ish. I definitely get the apprehension of prescribing them long term. I’m open to trying nerve pain medicines if he thinks they will help. Really will try anything including an injection, so I’ll ask about that as well. I know he had brought that up in the past but then had said the risks outweighed the benefits until he had more information on where exactly the injection would need to go.
Your words helped me so much @Isaiah_40_31 and @Jules, thank you so much. Helped me formulate what I might say tomorrow when I call and give me hope that this won’t last forever! Will update tomorrow with what I hear from the docs.
I have found the wedge pillow and the U-pillow on top of it helps me have a more stabilized neck. At my worst, oxycodone barely took the edge off the pain and using ice on the side of my head and neck. My neck, ear and temple were out of this world in pain. When you get to the point you want to walk into ER and make them take the pain, I can so get that! I had thoughts of tellign them just cut my head off to make it go away! Ultimately, I did get a combination of nerve block, botox and steroids. Personally I think the steroids although they took about 2 weeks to kick in, helped calm the neck/ear issues down which helped the temples. I also was and still am getting massage and now acupunture for left over ear/temple pain which I think is from the trigeminal nerve irritation that I had before surgery and made worse.
Whe I first started having these serve pain flairs I was given an oral steroid called dexamethazone which helped reduce the swelling and did help alot. Eventuallly over 5 year period it didnt work so much anymore. To get the injections, you will need to find a neurologist who specializes in these kind of injections. I was lucky enough to be referred to one by a pain specialist. After surgery (about 14 weeks ago), my TMJ kicked up quite a bit and Ive finally got it knocked down, but I did give some thought to radiofrequency ablation of the nerve. I under the desperation to make the pain go away and dealing with doctors and nurses who think you are drug seeking. when I got these 1st injections back in Dec, neurologist only felt comfortable giving me tramadol, which did almost nothing for my pain. It had gotten too out of control. 4 days later I had to press my PCP for a small RX of oxycodone and I had to really press him hard to get it. It did help me relax the jaw and shoulder helping the ear and neck pain some but only took the edge off but I was able to sleep better. Hope that helps
@Snapple2020 I am so glad your surgery has helped some! Thanks again everyone for the suggestions. It is awful feeling so helpless and hopeless. Yesterday was rough. Thankfully I had held onto a few tramadol to take just in case something like this happened. I took one and it helped, and then I did Tylenol and half of a weed cookie. Slept with the wedge pillow and between that and the weed cookie I actually slept very well. Woke up with minimal pain, but it is building back up again. Thankfully my partner called Doctor’s office this morning and they let us switch appointments (mine wasn’t until late August) so I am getting some face time with the doctor tomorrow and I can hopefully leave with some prescription or plan that will help me in the short term while waiting for the angiogram and whatever treatment hopefully comes after that. Is there anything specific I should ask about besides an injection of some kind?
The injection is usually lidocaine and/ or steroids, injected into the tonsillar fossa area, sometimes done guided by ultrasound. It’s done at times to confirm an ES diagnosis. Here’s a research study which mentions the technique:
But this doesn’t always help, & we feel that it shouldn’t be used as a diagnostic tool, it’s possibly worth trying while you wait for tests & surgery. I don’t know if Dr Hepworth has ever performed these.
I’d ask about nerve pain medications too- antidepressants or anti-convulsants are used in low doses, they can take a few weeks to work but might be worth trying.
Great that you could get your appts swapped!
You are in good hands with Dr. Hepworth, as I am sure you know from your partner! He has done amazing things for me. I have found dandelion extract to be much more helpful than the tea, you have to check though because a lot of them are just the root. I did some research and the leaf is the key. The only one I found with the leaf has the whole flowering plant. This has improved things for me significantly. 1 dropperful 3 x a day. This was also before I found out you are supposed to drink the tea at least 3 x a day though. It is a lot of tea to get results. I am going to a Physical Therapist that Dr. H recommended in Berthoud and she is really helping me too, but you have to check with Dr. H. I drive 45 min each way, but it is worth the trip. She is one of the few (maybe only?)in the country that specializes in this and has a lot of tricks to improve pain etc without or with less meds. Hope you feel better soon.
@Jen the tea I have is definitely the root. Interesting, thanks for the info. I just bought some leaf extract online to try. I am definitely open to physical therapy! Will ask him if that’s an option today when I go.
I had my appointment and am so glad I was able to go. He prescribed plavix (blood thinner) and more tramadol, to get me through until my next appointment in September, hopefully. Talked more about Eagle syndrome, he said my styloid is quite long and the ligament is possibly stretched across my arteries. Treatment surgery for whatever is going on would likely be performed by Dr. Kaminsky and Dr Hepworth together but I need to have the angiogram first to confirm what is going on. Now just hope I can get that over with ASAP as I am planning to switch insurance (which will be better in the long run) September 1 to get on my partner’s insurance. I really hope I can get the angiogram scheduled this month so don’t have to go through the pre approval process all over again! But that is a separate thing. Now going to see a new Gp today so I’m sure it will be great fun explaining all of this to her.
I’m so glad Dr. H supported you significantly today. I hope you can get that angiogram scheduled ASAP. Advocate for getting it w/ your head in the position where your vascular symptoms are the worst. A neutral head position will not show compression unless that’s the position where symptoms are bad.
I hope this is all over for you soon. I’m a little surprised Dr. H is having you do extra testing when removing the styloid would most likely take care of everything. I guess it’s better for him to err on the side of caution though.
He said something about making the case to insurance for surgery with just the ct scan can be difficult because lots of people with elongated styloid don’t have any symptoms. I’m not sure if that’s why he wants to do the extra testing but I suppose it can’t hurt.
I am so glad your appointment went well. That makes sense about the additional testing. There can be such complicated landscape in the area, so he likes to have as much information as possible about what he is going in to. Also, the more information the better for the insurance justification, and also if there are any other issues like disability. The more supporting documentation the better. Hope you are getting relief soon!
Wow… I took the plavix for the first time this morning and by 1:30 pm I started feeling better. Right now I actually feel “normal” and I’m not sure I have felt that in months even with the tramadol. No headache, only slight ear fullness and a bit of pain in my shoulder blade. I haven’t taken any other painkillers today, not even Tylenol or ibuprofen. Not going to be too optimistic just yet but I am shocked by how good I feel, and a little disturbed that something must be really wrong with my vein if I am provided this much relief by a blood thinner…
That is fantastic that the blood thinner helped so much!! I hear you about the concern. Know that each resolution helps get you one step closer to an answer to the cause. Fortunately Dr. H is not like many other doctors that are satisfied with just resolving symptoms. He looks to resolve the cause.
Please continue to keep us posted. I have been thinking of you!
Thank you so much Jen that is so sweet. This group has been an absolute gift and I am so glad to have it as a resource for support and information. I also feel sooo fortunate to have found Dr. Hepworth almost just by chance? I first went to see him during the lockdown so he had tons of open appointments and I got in right away. My partner has complicated diagnoses and medical issues, so I figured that he was one of the best just because of how much he has helped my partner, but I had no idea when I initially went to see him that a) this was my issue and b) that he was an expert in this specific issue. For a while we thought it was something with my salivary gland! Wow. Even with how scared and anxious I am for this angiogram/potential surgery, and how unfortunate it is to deal with this awful pain for five months straight, I still feel so lucky. Trying to stay positive…
I called the Neurovascular dr office and they think they will schedule me for the angiogram the week of August 24 but have to call once insurance approves to confirm date. Feeling ok with that because the plavix seems to be helping me so much. Im trying not to obsess and think about everything that can possibly go wrong during that procedure but it is hard. I am not scared of needles or anything just very scared in medical settings. Something about being so out of control and vulnerable, I don’t know. I was extremely worked up with anxiety just going to the consult and cried a lot afterward. My best friend is going through treatment for breast cancer at the age of 29, so I just keep thinking, if she can do chemo and have a port placed under this same sedation I am getting, I can do this and I will be ok. I do have a small vacation to the mountains planned for the weekend before the 24th, so it would be great if I did not have to cancel that. Then I have a follow up with Dr Hepworth already scheduled September 17. Will continue posting here I’m sure as my angiogram gets closer. Thank you to everyone! I am so grateful.